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I am a bad caregiver and I feel like I can't do it anymore
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...
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Thank YOU!
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2 ReactionsDear Yolanda,
Your story is so difficult, and I fully understand your feeling pushed to the brink. Caregiving is hard. Put your foot down and DEMAND some resources. SNF will give you a little respite, or if they really feel strongly it’s a no, see if your insurance will cover some in house nursing. I was a caregiver for over 3 years and know how tough it gets. I ended up working with my own therapist weekly, which helped a lot. You have to prioritize yourself and fight the isolation that caregivers often end up in. Do you belong to any church or part of a community? I had a Caring Bridge site where I requested specific help from friends. Meals, people to come walk with my husband, sometimes just a request for cards. The cards uplifted both of us, and gave us an opportunity to reminisce about how we knew each person. It also gave us an opportunity to talk about something other than his sickness. You have to fight letting your world get 100% focused on illness. Finally, don’t discount the value of some medication for yourself. I benefited immensely from meds that helped manage anxiety. Normally I am super calm, but like you, was pushed to the limit. Hang in there, and hands on your back from this group. My husband recovered and life is so much sweeter now. I hope you get the same outcome.
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7 ReactionsMy sister went through what you are going through. Only her husband only had one treatment and refused to have anymore. He had oropharyngeal cancer. She could only get some home health-he couldn’t get into hospice until a week before he died. She is probably 95 pounds soaking wet and has a failing neck surgery so she couldn’t do much. Everyone gave her all the advice that is on here, but nothing worked. He even fell in the bathroom when the home health nurse was there. The nurse wouldn’t help my sister get him off the floor until my sister threatened to call the administrator of the program.
You are not a bad caregiver. The situation is bad, not you.
The only thing I can think of is to tell them you will not be home-take your pets and check in to a motel. Or if he goes home, every time you can’t get him up call 911 and get EMT help. Or talk to the administrator and request different physicians. It is horrible. You may have legal rights to keep refusing to take him home. Maybe an attorney can help with the hospital too.
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9 ReactionsIf your husband is on any form of medicare, refuse discharge and appeal through medicare. Tell the physicians and case managers
you are aware they must provide a safe discharge plan. If not medicare, have you contacted your insurance company and asked for a
case manager? Speak with someone in that department or utilization review and explain what you are seeing and being told. They should take it from there.
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6 ReactionsAn attorney who specializes in Medicare and eldercare issues.
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1 ReactionOn our benefits plan, we pay 20% for the cost of an ambulance - which was $100 plus dollars last time we were charged,
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1 ReactionIt is horrible. The whole thing makes me angry for you.
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1 ReactionThank you so much. I am hoping for a positive outcome but I am also preparing for the worst.
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1 ReactionThe surgeon was adamant that he could not go to an SNF due to infection risk, so I had to bring him home. I think it was a huge mistake. They pulled his drains too early and the doctor said we would not pull drains just to send him home if that is what you think. That is exactly what I think.
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3 ReactionsNo, we were not able to get the help he needs, so we are muddling through the best we can. I am trying to help him heal and get his strength back. I thought we were doing good but his face swelled up again last night/ now. I woke up and thought I heard him gagging but he was gasping. I checked his o2 which is good he was at 99% but his face is swollen 3x his normal size and he feels breathless. I gave him an ice pack, I know it doesn't help but he doesn't so in a way it does. As I sit here I wonder what I should do for him at daybreak, if I call his surgeon she will want me to bring him down the mountain to her maybe, and if we go she tells him it is expected to have some swelling so that doesn't help. I could call his primary but he is afraid of the cancer diagnosis so that doesn't help. I could call his oncologist but he says it is in the surgeon's hands so I kind of feel stuck.
I told my husband to try and take deep breaths and relax, if it doesn't get better we would go to the urgent care and see if someone might look at his throat and make sure it isn't swollen. I don't know what else to do for him.
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6 Reactions