I am a bad caregiver and I feel like I can't do it anymore

Posted by yolande73 @yolande73, May 22, 2023

My husband came home just a little over a year ago and told me he had stage 4 Head and Neck cancer. My world stopped and I felt as if life had somehow betrayed us.
He had been to the doctor 6 months earlier they did the tests and imaging and told him he did not have cancer. He went back to work as a long-distance Truck driver. The only thing is he did have cancer, he knew he had cancer, he just hid it from me and got no treatment for 3 years. He lied he let me buy a house knowing he was dying the whole time. I can't work as I have a severe spine injury that leaves me in pain 24 hours a day I am unable to lift over 5 lbs. Forgive my rambling...

Anyways fast forward to April 25 2022 He comes home from the urgent care and tells me he has cancer. We went to the oncologist who told us it was stage 4 and the best advice he could give us is that if there was a chance my husband should take it. So he did radiation for 7 weeks with one day of chemo a week. They stopped the chemo early as his body could not take it. After the PET scan, the radiation doctor told us it was partially successful. He also stated that if the cancer started to grow and he received no treatment he would have 6 months to a year. Well, the cancer is growing it has been 11 months of tests and no treatment. 2 weeks ago the ENT and the oncologist decided that the only option left is a Hail Mary surgery that is very risky and has a low survival percentage.

The whole point of this is that I am a bad caregiver, I make sure he has his formula and water and his pain pills. I have him watch tv on the couch when he is awake. He gets up at 9 am and is napping by 11 am wakes up to eat at 4 pm and goes to bed for the night at 730pm. I make it a point to spend an hour with him every day when he is awake, other than that I hide in my office and come out to check on him periodically. I can't sit with him and watch him die, I can't sleep by his side at night afraid that I might bump him and cause him pain. I forget his schedule during the day because he will get up and feed himself slot so when he doesn't I don't know. Until I do.

He spent the first 4 months at home telling me every chance he got that he was dying and I needed to accept it. Okay, I got that. Then he told me I don't love him enough, I leave him alone too much, I don't do anything for him. I go nowhere I talk to no one and all I do is the best I can to take care of him. But sometimes, a lot of times, more and more I just want to run away. I would rather face off with a mountain lion than do this one more day. I am tired I am lonely and I am scared and I just don't know what to do. And now he is having surgery on Wednesday that no one thinks he will survive...

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

suew4730 | @suew4730 | Jul 6, 2023

There is no way you are a bad caregiver!!! You are amazing and you are honest. You have cancer just like he does, maybe worse because you are living it through him. There is no reason why you should not get time outs, you know he is safe and taken care of. You need to recharge your batteries. Just like the airlines instruct adults, in the event of an emergency to put on their oxygen mask before their child, if you are not healthy you will not be able to help him. Please do not beat yourself up. You are doing a super human job. Support him in this surgery and pray for the best outcome. It is not in your hands, it is in God’s. Praying for strength for you and good health for him. Hugs❤️

andipandi1223 | @andipandi1223 | Jul 12, 2023

I am so sorry you are having to go through through this. I am sure you have resentment for his secrecy and now you are left with a very sick husband and a lot of financial responsibilities. I have a husband who has severe dementia and I get overwhelmed and cry a lot. I pray and ask God to give me the patience to make him as comfortable and joyful as I can because I know this too shall pass and I don’t want to live with the guilt. I hope this helps.

buggirl55 | @buggirl55 | Jul 13, 2023

i am so sorry. my dad was absent during my mom's hospice care (which i stepped up to be the primary caregiver). i wish there was another person there to assist you. that way you don't feel guilty. you have alot of emotions and escaping is your coping mechanism at this point and that is totally normal. Please don't say you are a horrible caregiver. you are doing the best you can and better than alot of facilities. i always said my mom would have had better care in a facility but i know from family i was the best care she would have gotten as i loved her.

clkurth | @clkurth | Jul 13, 2023

I’m going to weigh in here. None of us are bad caregivers. We’re just humans and not super humans. These endeavors are Herculean, without question. We need to give ourselves grace. This is a very tough trial for us all. It’s normal to prefer to fight a mountain lion than to take this role on. We all want to run and hide and abandon ship. Try not to hammer yourselves with any additional burdens of “not doing it well enough.” Most all of us are living at the ends of our human limits. Pray for the capacity to stretch one more day. That’s about all you can do. Go see the wildflowers when you can, to remind yourselves that life is still happening. And there will be a fresh tomorrow once this all passes, most assuredly.

jshdma | @jshdma | Jul 13, 2023

@yolanda73--- bad caregiver? Just the opposite. You deserve huge credit just for going through everything you have. Give yourself a break. We try to do the best we can, but you can't measure up to an impossible standard. Even Jesus did not want to be crucified (check on it). My pastor told me, yes you are "your brother's keeper," but it's got to be somewhat within reason. Give yourself a break.

soscared4mylove | @soscared4mylove | Jul 14, 2023

Bless your heart. I wish I could offer you a break from time to time, but my Hubs was diagnosed in Feb. with pancreatic cancer, also. He is 2 weeks past his final chemo treatnent, then he will move on to radiation, then surgery. Thankfully it was found extremely early in the head of the pancreas.

Living with some experience, he is playing the Death Guilt card, extremely cruel behavior.

You obviously were just as terrified as he was when he first knew, which truly revealed your love for him. You may need to actually sit him down and have a 1 on 1 talk about what he is doing to you. My Hubs (who would never have said this before) when I asked him if I could do anything for him and his reply, "I wish this was you and not me". Btw, he had just woken from one of his many naps and apologized innediately. He's terrified of the surgery and his chances are so nuch better than your husbands.

My wish for you, is ~Peace & Strength~

Sheryl | @grandma88 | Jul 15, 2023

I’m just now seeing your post from May. Do you mind giving us an update on your situation so this group can continue to offer you support? I pray that you are doing better and are able to cope with whatever hardship is sent your way.

richardab | @richardab | Jul 16, 2023

I'm sorry for what you're going through. Sounds like your husband is stuck in the anger phase of reacting. I know the stress piled up on you, perhaps just sit and ask your husband to simply talk, say what he wants to.

My wife has had peritoneal cancer for several years now. I am the caregiver, doing most of the things needing doing around the house while also taking care of my grandkids while their mom's at work. I guess she got tired of me b*tching about her docs not doing enough several years ago, they never even found where it located in her body and have just had her on various oral chemo drugs. But she told me she didn't want me to interact with her docs. Well, her latest CA125 showed an increase of 40% to 55, now her gynecologic onc is worried. So I'm angry beyond words and worried also.