help for the hopeless?

livingfornow

hi, everyone, joining this five years into caring for my sick dad (first it was covid, now it’s end stage metastatic head and neck cancer), maybe just to vent, but maybe someone here knows what to do in my situation.

at the beginning, dad’s cancer diagnosis was positive and he was receiving care at the preeminent cancer treatment center in our area through their community care program. they told us that they’d remove the tumor, threat the area with radiation, and life would be back to normal. it turns out that the docs there lied about the severity and the spread, treated one area, and then cleared and discharged him without letting us know what they already knew about the ticking time bomb in his head. fast forward a few months after he was “cleared”, and we find out that he was very much NOT clear, and that his road to recovery was actually the road to hospice.

as his physical health deteriorated, i tried to step up and take care of the incidentals for him, but had to step back down because it made dad insecure about his own ability. for the past two years, things have steadily declined, despite consistently receiving positive updates from the VA (who we transferred his care to) at his appointments, and we’ve reached a point where dad can’t take care of the things he was used to taking care of without hurting himself.

it’s so hard for him to accept help (for many, many reasons predating my birth), but when i offer a helping hand, or offer to take him on an outing to relieve some of the stress he feels, he spits on it. i’ll admit that i made a mistake several months back believing that his cognitive state at the time was functional enough for big decision making, and listened to him when my estranged mom blew back into town and let her move back into the house (she’s still on the deed bc they never divorced). this was fine for a day until she started back up with her antics that drove them apart a decade ago.

back when the terminal diagnosis was handed to us, the VA offered help in the form of home hospice, pain meds, and therapy, but my dad refused any and all of these, and we remade plans for what would be the end of his life as we could. my mom’s arrival blew all of that up, and despite continually being offered these services, my dad continues to turn them down. he doesn’t want a home hospice nurse, he doesn’t want other family around, he believes that everyone around him is out to take advantage, and most of all, he just wants to die.

it’s been a few months since that happened, and i was finally able to convince my mom to leave, as her presence was unhelpful from every angle and the mere sight of her upset my dad beyond reason, but now dad has propped me up in her place and is just lambasting me with constant criticism, screaming at me for offering to help prep his meals or administer his meds, hurling racial abuse at me (he’s white, my mom is not), and wants to micromanage literally everything i do in the house.

i’m still here because i love my dad, i understand what the cancer and the meds and the general state of the world are doing to him, and i may not be perfect, but he feels like i’m the only one he has (only child born later in his life & no one else in our family has stepped up to offer the kind of care he needs). i WANT to stay here to be here for him, i want to take care of him, i don’t want him to die alone, feeling unloved, but as time goes on, it seems like the only thing that will satisfy him is for me to leave and leave him to die. outside of some short term memory issues and hearing loss related problems, dad’s mentally sound to make his own decisions, so filing for conservatorship would not only be useless, but a massive betrayal in his eyes, and i don’t want to do that to him.

he has so very little left wrt time and independence, i just want to help him out and spend this last bit of his life with him, but i don’t know if that’s possible at this point. i don’t have my own money (having been out of the formal workforce for these past five years and not receiving any compensation for caregiving), so moving out to stay near is currently impossible, but my friends (out of town) have already made plans to take me in and help out when he’s gone until i get back on my own feet. the problem is me; leaving him feels morally and ethically illegal. i’m losing my mind and my hair, but it feels like i’m trapped with no good option left to pick.

Ljones091987

My dad is not as isolating and mistrusting as your dad (and the poor guy probably has a right to those feelings, his doctors lied about creeping death in his head), but I too, live with my dad as his caretaker and am the only one as my parents divorced when I was 11 and my sister lives in her own world where she's the only one that has bad things happen to her. My dad does not currently have cancer, but the effects of the treatments that beat the cancer so he could live, absolutely destroyed his body and made his quality of life total crap. Before I moved in, I would call him or come over every day after work to make sure he was okay and that he took his meds. He can tend to be very selective about how much the chemo affects his memory. There were many times when he would make himself sound much better on the phone, until I would see him in person and have to force him to go to the ER because he would literally be dying of pneumonia, or a brown recluse bite. (Yeah, beat two stage 4 cancers and almost got taken out by a spider and his own stubbornness.) I did set an alarm on his phone once to help him remember to take his medications and a week later, he left me three very nasty voicemails about it. About a year and a half ago, I moved in with him by default, but after a few months of actually being around him 24/7, I could not believe how much he legitimately needed SOMEONE here with him. Despite beating a lung cancer, he still got COPD and has become oxygen dependent. All the daily maintenance meds he takes now are due to what the radiation and chemo did to his body. It destroyed his esophagus which developed an ever increasing case of dysphagia, and we celebrate at the doctor these days when he weighs in at anything over 120lbs. Now, despite all this, he is very much the same as your dad, a very self-reliant almost superman who I probably saw get a minor cold once before he was diagnosed with the tonsillar cancer. As I was in school for a healthcare program, I COMPLETELY turned into his live-in nurse and this resulted in A LOT of fights. I mean, I never thought my dad would say such horrible things to me and I felt so useless and hurt because all the things he would get mad at me for were things I was only trying to do to help him feel even the littlest bit better. I'm very sorry that your dad is feeling this way about the people around him while he is so sick. That must be so scary and confusing for him. And I'm sorry that it has resulted in him turning it on you. I have to tell you though, after many times of my dad projecting these things on me, when all I would try to do is help, I finally had enough. There is a difference between being a caregiver and constantly being abused by someone who is dying and flinging their anger at life at everyone around them. I have struggled with mental health for over 20 years and constantly being belittled and verbally bashed for doing the right thing was tearing me into pieces I realized at one point I would never recover from. I finally threw my hands up in the air and told him that I'm not doing it anymore. I still live with him and take care of everything in the apartment because even the act of folding laundry lands him in the ER with a COPD flare up. But he still tries to do things that exacerbate is rapidly declining health and instead of all the fights, and when he declines my help or telling him to take a break, I just tell him, "you know you're going to feel like **** after that." It makes it harder for him to argue with me because I calmly offered help, he said no, I told him what he already knew and it makes it very hard for someone to berate you for not understanding when I literally have saved his life 3 times now when his O2 plummeted and rarely sleep because when he coughs in the night, I wake up regardless as my body is programmed for death and disaster now. I know there is probably a lot more to your dad, but I legitimately had to stop the constant pushing, no matter how much the impulse in my brain screamed otherwise, because at this point, he could die at any day. If he want to fix the screen door despite the fact he might have massive amounts of pain in his deteriorating cervical spine (thanks radiation!), for the next 4 days, then it's his choice to do that. He could die 10 years from now, or he could die tomorrow. Being a shell of the person you once were, in a body that is in immense chronic pain all the time leaves a lot of room for untreated depression. And my dad is getting worse every day. He might even need a feeding tube soon, his dysphagia is so extreme. Despite the fact that he's probably more miserable because his meds aren't regulating his basic bodily functions, there was a brief two months where he became VERY good at remembering to take his pills after I told him I was done reminding him. At this point he can't even swallow them without choking and them coming back up. We've ended the nonstop specialty doctor's appointments for pain procedures, ENTs, and other things I wanted to so badly fix for him. We are less stressed, he has more time to do things that don't remind him he's a decrepit old man now, and despite his body falling apart before my eyes, the last 6 months have been the best we've ever gotten along, even including before I moved in here. The uncontrollable urge to fix every aspect that makes your dad miserable will never go away, but I've learned to turn the volume down on some things and focus on when real emergencies are taking place. Our dads have already spent enough time with doctors and people telling them what to do to make them better and despite being cancer free, he's still dying because of the cancer anyway. The risk-benefit factor of cancer treatment is an extremely fine line. He was crazy healthy before that and now he can't even enjoy his favorite foods. So I step back and let him come to me when he wants the help. Don't know if this will work in your situation, but I hope something in this endless ramble touched base with you and helps you and your dad spend his remaining time here in a way that makes him feel like at least he still lived a little before the end. Sending much love and hugs. Cancer is hard as f$%k, but caring for a dying parent is its own form of pain and torture. <3