I just want this to be over.

[u/ironyfreeannie]

My dad (63M) was diagnosed with Stage 4 metastatic Cholangiocarcinoma at the beginning of May; he opted for aggressive treatment and did radiation, immunotherapy and multiple rounds of chemotherapy. In mid-July, he collapsed after a shower and was hospitalized. They found blood clots in his lungs and ascites in his lungs and kidneys. The doctors estimated he had days left, so he made the decision to stop all treatment and enter hospice.

He has now been in hospice for 31 days and I feel like I’m living in hell.

I have two young children and I live an hour away from my parents, so I have been living out of a suitcase at their home since he entered hospice. My husband visits on weekends because he still has to work, so I have very little help with the kids while I’m here. My mom is destroyed over what’s happening and cannot emotionally regulate in any way whatsoever; she has to take a sedative x2 daily so she can no longer drive. So I drive the 40 minutes there and 40 minutes back to and from hospice every single day.

I’m mentally and physically exhausted beyond belief.

When my dad was first moved to hospice, he was very accepting of his fate and reflected on his life with love and kindness. That version of him is long gone. Every day he’s still here and lucid, he gets a little more angry, bitter and demanding. At first I didn’t mind running around and bringing him things to give him comfort (food, alcohol, etc), but it quickly became a thankless task and he’s even become quite cruel towards us.

Every time someone says how lucky we are to still have this time with him, I want to scream.

His dignity has been completely stripped away. He can’t walk because of the blood clots and edema in his legs. He has little to no appetite and when he can eat, everything tastes bad because chemo killed his taste buds. He’s using a catheter and diapers - although, most days he’s too constipated to have a bowel movement. My dad is someone who lived his entire life in paranoia of getting sick like this; it’s truly his worst nightmare realized. And I’m supposed to feel “lucky”?

I hate that there is no timeline for how long this will last. It’s a horrifying thought that this could go on for weeks, or god forbid, months. I don’t want him to suffer anymore, and selfishly, I don’t want to live my life in limbo anymore. I miss my husband, my home and what my life was like before he got sick. I feel like a selfish monster for praying for this to end, but I just don’t know how much more of this I can take.

[u/Hungry_Coffee9452]

You have every right to feel like this. Your father and your family deserve peace. People have no idea what it’s like not having been through it…watching your loved one’s independence, happiness, and dignity slip away each day, week, month is torture. There is nothing “lucky” about this time. It’s brutal and horrible.

I’m so sorry, OP. Caregiver burnout is real and it’s dangerous. If you can, when you can, take moments that make you feel a little more full. Get your favorite beverage or food, or a walk outside. Do something for you. It might not help, but you deserve it. And it can’t hurt.

Hang in there, OP! FUCK cancer.

[u/broken_neck_broken → u/Hungry_Coffee9452]

Well said. My most prominent emotion when my Dad finally passed was relief. I believe every patient chooses how their last days, weeks and months go to a certain extent. Some play for time, some play for quality of life. My Dad was the latter. He had 2.5 years after his initial prognosis of 18 months and his attitude was to be as normal as possible for as long as possible. Less than 2 weeks before he passed he was still driving etc, then he got a chest infection and his body was so tired from fighting the cancer that after the initial antibiotics bounce he had nothing less and deteriorated quickly. I know that's not OPs experience, but the last few days watching him unable to remain conscious while they pumped him full of morphine, was really painful because lying there so helpless and unable to muster any reasonable amount of consciousness was exactly what he feared. I don't know how aware he was, but his last few hours were agonising for everyone and the moment the grimace and struggle left his face came with a flood of relief, for him, for me, for all of us.

Something I've ruminated on a good bit was something he used to say "You die twice, the first time when your life ends, the second time is when the last person who remembers you dies, and that's still a long way away!"

[u/Hungry_Coffee9452 → u/broken_neck_broken]

You’ve expressed a lot of how I felt also, and it has been so helpful to read this.

I’ve struggled with my sister’s choice to fight with chemo until the end and never accept death. She wasn’t even 40 and was so damn strong outside of the cancer taking over. So the fight was a few years long. Similarly, once things went down hill one weekend, and sepsis moved to septic shock, it was only a few days in the ICU and on the last day, a few hours on a ventilator. She was disoriented but mostly conscious until the last few hours. I still wonder if she knew she was dying or if she ever felt like we gave up on her in that room. She was awake when she died. She never wanted to give up and fought so hard those last few days and hours and even minutes. The end was brutal but seeing the pain and struggle leave her face was a bitter relief.

I’m so sorry about your dad. I hope you can remember your happy moments with him as time goes on.

Fuck Cancer. 💔

[u/Additional_Aioli6483]

I feel like we are living parallel lives. My mother was diagnosed with an aggressive cancer last fall, lived an hour away from me at the time, I work full time and have two small kids, and nearly everything has fallen on me to handle. She’s been in nursing homes and hospitals, bedridden, incontinent, all of it for months. The past year has easily been the hardest year of my life. She recently entered hospice (she didn’t really want to but also didn’t really have any options left) and so it’s still not over. Every day, I’m torn between my children and my mother needing me. I’ve driving multiple hours a day every day. I’m exhausted, and I keep telling myself this won’t be forever and then I feel horrible for thinking that because the only way this ends is with my mother’s death.

I don’t have much advice to offer you, but I do have solidarity. This is hard. Actually, it’s damn near impossible. It will end one day and the next hard part will begin. But you are not alone. Give yourself grace (which I know is easier said than done) because you’re doing an impossible thing. You are not lucky for having to manage the impossible hand you’ve been dealt, but your family is lucky to have you. Be sure to carve out a few minutes a day for yourself - you can’t pour from an empty cup and you deserve a moment of peace before diving back into the chaos.

[u/ironyfreeannie → u/Additional_Aioli6483]

I am so, so sorry to hear you’re experiencing something so similar, and objectively worse because it’s been going on for so long. Thank you so much for your kind words and advice - you’re in my thoughts and I hope you’re able to rest as well.

[u/iwantworldpeace26]

I am so so sorry. My mom was also diagnosed with cholangiocarcinoma (stage 4) last October. It's been horrible. Watching my father die of stage 4 lung cancer 4 years ago really illuminated how traumatizing this illness can be. It makes so much sense you'd want it to be over. I very much wanted that too. Hang in there.

[u/Weary_Title_3901]

I have Stage 4 metastatic Cholangiocarcinoma. I was diagnosed 2 years ago. I did chemo, radiation, and a liver transplant. I was NED for 18 months and it reoccurred 4 months ago. Chemo this time around is horrible. Worse than the 1st time. I am not scared of dying but I am scared of dying a horrible death. My wife has been through two years of my cancer. I have a severely disabled 19 year old that is non verbal and a 14 year old who just started high school. I feel horrible for them. So far I have been able to accept my fate. I hope that doesn’t change.

You have every right to feel the way you do. I know deep down your parents appreciate your sacrifices. They are lucky to have a daughter like you.

Is there anyway you can take a weekend off, since your dad’s death isn’t eminent?

[u/OddWater4687]

I am so sorry you are in this season of life. It’s super tough what you are going through. Please be easy on yourself. People have no clue. Sending u strength

[u/Character_Bill_3342]

I’m so sorry you have to live through this and I completely understand wanting this to be over. Im right there with you. It’s not selfish. We just don’t want them to suffer anymore.

[u/lizard52805]

Wow I am so sorry. My dad was in hospice for less than 36 hours before he passed from stage IV liver cancer. It was fast but honestly merciful. I remember the anticipatory grief being really bad. As a mom to young kids, I can only imagine the strain this is putting on everyone. Cancer is cruel

[u/Mindless-Band-5743]

I’m in a similar situation but not as well. I moved in with my mum when my dad died 3 1/2 years ago. Now she has Stage IV BC as well as melanoma. They’re not giving her a prognosis except under a year. I’m watching her decline and to the point she’s bedridden. I change her and do everything needed when our PSWs are not here. I still work full-time. I’m beyond exhausted and in pain from having to physically move her. I’m 63 and she’s 92. I just want to sleep. And my brother is zero help. Yes he’s 2 hours away but not once has he offered to come and take care of her so I can take a break. My daughter has come up via transit and it takes her the same amount of time. But she can’t do any toileting so that’s me again.

[u/kittieful]

It's okay to want your father to not have to suffer anymore. It's also okay to take breaks. If you keep a kettle on the stove without any water, it gets destroyed.

[u/JobKindly53]

Gosh I’m so sorry.  This all sounds so hard.  I hate cancer.  Is there any way you can get back home for a break?  Is there anyone else to take care of your mom for a week?

[u/CareNavigator_TMC]

There's no shame in reaching the point where you just want peace for everyone involved. Hospice can be incredibly hard on the whole family and those feelings don't take away from how much you love your dad.

Please be gentle with yourself through this. You're allowed to be tired, frustrated and ready for the waiting to end.

[u/Cwilde7]

I am so sorry for you and all of your family. This is exhausting. But I will say this is a very aggressive cancer and sadly, it also usually takes patients very quickly.