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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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Married 64 years !
Hubby has had three strokes! His mind was extra sharp! Now it is semi!
His memory is good!
He has home health ! For PT!
Bless him
He is on a walker and oxygen !!
This has been our life since the third. Stroke( two and 1/2
Years ago)
I am the only care giver!
He can shower by himself and dress himself ! Which is a blessing ! Or he would not be home !
I now weigh 112 lbs ! From 145!!
Guess a great diet ! Except I am 5ft 8 and look like a stick !!
My husband was always very active as well as social !
Golf everyday ! Friends ! Out two or three times a week for dinner!
Now that has all stoped! For us!!
We have friends over ( I cook )
I’m also on a walker ! With osteoarthritis !
Makes things double difficult!
I am 84 and hubby is 87 !
So glad I found this site!
I truly felt alone !!!
I am a only child !
Not very much family
Two grown children that live in different towns
4 grown grand children
Wonderful!!
But have full time jobs ! Different towns !
We do have 2 great couples ! Friends for years !! That are both in good health!
That still are very active !!
They help when ever I call!
I do not have to even tell others That are here on this site !
How difficult life seems to be ! Everyone going thru the same as we are!!
I am
Happy to see it is spring time 2023!!
For richer or poor !! In sickness and in health!
Wedding ! Long ago !!
That is us!
I pray that each day ! God has given us ‘. Another !! DAY!!
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9 ReactionsYolande, I agree with you & am getting a similar reaction from people I ask for help, including people recommended here. They don’t listen & don’t help. This is probably the hardest thing we will ever do. Certainly it’s my hardest thing. I am sorry you are having trouble too.
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7 ReactionsIt seems to be the usual thing to discharge people to family with no concern that the family cannot handle the situation. I think this is a huge problem that needs to be addressed in our country. The only people that come out well in this situation, in my observation, are people that have plenty of money to hire help. Maybe people that are absolutely destitute get some help. I am sure sorry you are going through this. That feeling of wanting to run away and hide is so familiar to me that I changed my phone ringtone to "I ran." My situation was much different than yours is. Still, I sought help everywhere people told me to search and there was no help. There were plenty of sassy remarks, but no actual help. I wish I had an answer for you, but I am hoping you at least know that you are not alone.
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9 ReactionsNew Update - I went to the hospital again today and stayed for about 9 hours to watch and see. The PT people could not get him up to walk as blood came gushing out of his graft area when he stood up. Then a "resident" came in the room to speak to us about the blood bandage which she would not change because the surgeon is very particular about her patients' care. While she was there she wanted to discuss his discharge, again I told her that I could not care for him at this point. I told her he can't get out of bed, he is unable to ambulate alone, and he is not able to shower, or toilet unaided. He refuses to use his feeding machine for his feeding tube at home and wants me to bolus feed him, with my carpal tunnel I can't push the syringes to feed him. He has 4 drains in his chest, and I don't understand how he can come home with them in place. The worst part is that he and I agreed and told the attending doctor that he needs to go to a SNF. The resident and a few CNAs have scared him with stories of the facilities holding patients against their will after they are well enough to come home. We cannot get home health care where we live, the hospital has already checked this out, so I would have to do everything unaided. I asked him in your current situation do you think I will be able to take care of you and he said no, So if we have talked to the social worker, the hospital ombudsman, and several physicians and can't get the help he needs what more can I do???
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5 ReactionsI admire your strong attitude. You are going through so much and yet you seem to take it in your stride. God Bless you !
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2 ReactionsMy brother in law had a serious leg infection that allowed the doctor to send him to a rehab facility because he was 84 and lived alone and could not care for himself. Is there any chance that this might be possible for your husband. I am so sorry that you both are going through this.
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3 ReactionsHave everyone reevaluate him for a skilled facility.Even if it is rehab .That's what I had to do for my husband it was the best 10 days for his health and mine .Good luck keep fighting .♥️🙏
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3 ReactionsSNF cannot hold patient against their will. Medicare and US News rate SNFs -- take a look at the ratings and read comments
https://www.medicare.gov/care-compare/?redirect=true&providerType=NursingHome
https://health.usnews.com/best-nursing-homes
If your husband is a medicare patient and the hospital is discharging him before he is ready for discharge, call Livanta (Medical Quality) and file an appeal. This will give you at least 2-3 more days in the hospital while Livanta completes their invesitigation, longer if Livanta agrees he is not ready for discharge. If not Medicare, the social worker should give you appeal instructions. https://www.verywellhealth.com/how-to-fight-a-hospital-discharge-2614873
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4 ReactionsI don't often recommend such drastic action, but in your case, since you have tried going through "chain of command" get in touch with both the Medical Director and the Hospital Administrator and explain what you are going through. You both may need to be obstinate about not budging on this matter until the holiday weekend is over, and people are back at their desks.
I am not sure where you are located, but many hospitals have rehab units within them to which they send patients who are not ready to go home. Or they have a contract with a nearby hospital which does have a unit. In that unit, they do rigorous PT & OT as well as constant assessment to determine when the patient is ready for release and what the next step will be.
Sometimes you can appeal to your insurance company for assistance. And if your husband is 60 or older, your state probably has an Office of Senior Services where you can appeal for help.
Please keep coming back and sharing, and we will keep tryin to help you find a resolution.
Sue
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6 ReactionsYolande,
Thinking of you and wondering if you were able to get some help with your husband?
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