Losing Dad by Inches

[Lastleafgreen]

I've been at the hospital for hours every day for eight days straight. It wears on you. What's wearing on me today is that we've had to make some serious decisions with our mom. 

Dad was diagnosed with colon cancer in April. We really thought he had a great chance to beat it. But one thing after another happened. Even up till Christmas we thought he just needed stronger chemo. He'd been complaining of belly pain for months but nothing was being done. Then after new year he declined rapidly. Mom took him to the emergency and they switched him to short care. He had a severe C-diff infection. Again, we thought antibiotics and he'd be home. Unfortunately the second day in short stay his bowl ruptured and he was taken in for emergency surgery. He survived, but was in SICU. We found out he was riddled with tumors that were under a centimeter and thus didn't show up on scans. Then he survived another surgery to close his stomach, but further chemo treatment was no longer possible. That was on Thursday night. It's been going on six days and he hasn't woken up.

When they try he doesn't follow commands or make eye contact. They've run a battery of tests and nothing seems wrong with his brain. I learned about ICU delirium today. I've learned a whole slew of medical terms in the last weeks.

Dad never, ever, wanted to be hooked up to a ventilator and in a coma for a long period of time. So for the past two days we've been discussing a Do not resuscitate order. That got put into effect last night. Today however, we had to start talking about when would be the right point to switch to comfort care instead of maintenance. 

I try to focus on what my dad would want. I remind myself of all the things I am grateful for. That I always told him I loved him every time we talked. That I hugged him whenever we saw each other. That my mother, brother, sister, and I have become this phalanx of will and support for each other and him. He would be so proud of us. But it's still hard. 

I find myself sometimes angry with him for not fighting harder. I wish I could will him into opening his eyes and recognizing the world again. But I know it's a selfish desire. My father is not going to see February. If he sees the end of the week it would be a minor miracle. I kind of hope he's already gone in spirit. Then maybe this whole stay in the hospital won't be something he takes with him. Maybe then when we're forced to make the decision to remove life support we'll just be putting a body to rest and not killing our dad.

[nuvar]

Im very sorry to hear about this. What you've been through is reminiscent of what happened to my mum. Only my mum struggled hard to fight on for 3 months and we were duped into having an operation which she should not have gone through otherwise she would still be here with us today instead of being in CTICU for 3 whole months with eyes wide open and not being able to speak because she was hooked on to ventilator. It's the most painful experience I've ever seen. Honestly, if u were in my shoes u might feel worse.

Im sorry if what I said above makes you feel bad in any way. But maybe being unconscious is better in a certain sense (if the person does not consciously feel his or her suffering). I apologise again if my words come across as being insensitive but I dont really have the right way to put this across.

I guess to sum up, there's no better or worse (maybe). It's not definitive in this sense. I too, struggled with the decision. I think there is no absolute right or wrong.

If you must, get medical opinions. Or ask an outsider. But I dont think everyone can agree to a decision especially if they are not in the situation, not vested, or have never experienced such situations.
It's good that your family is supporting each other. My dad has dementia and he doesnt fully understand. My relatives all left me in lurch and I was the only one sleeping at the hospital for 3 months. I guess there's no point comparing at all.

I dont know what else I can say to make you feel better, or just less worse. If what I typed above hurts, Im truly sorry.

The key-takeaway is: I think your family can work together and make a decision so the burden does not lie solely with you. Think of what your dad would have wanted or what he would have wanted you all to do.

Thinking and praying for you, your dad and family

[Lastleafgreen]

Oh Nunvar. Do not worry that your words were blunt. I often find myself being the same way. Grief is complex. It's the best word I can find. I am so sorry you went through 3 months of your mother in that condition. Horror and pain are my first thoughts imagining it. Being hooked to a ventilator in those circumstances, with the person aware of their condition, is a hell I am so very grateful I can only imagine. There aren't words for me to express my sympathy on the matter. I can only send you virtual hugs. I'm not very far into my own path of grief and I hope I'm not coming off as disingenuous. I guess we do what we have to do to get through things. It makes us stronger in a way, I think. And I like to think it makes the people we tried so hard to be there for, proud of us.

I agree with you. It was so much better to know he was unaware of the condition he was in. We had to make the choice to take him off life support on the 17th. The neurologist explained that during one of his surgeries something had been damaged in his brain. I was there when he took his last breaths. It was cathartic in a way. My mother, sister, and I ranged around his bed laughing because he would breathe and then stop. He was faking us out over his last breath. I image he thought it was funny to punk us. It would be like him.

Little things are what I grab onto now. That he's not in pain. That he went with dignity. That he was surrounded by love. I pray that when I was in the room, telling him to go, that it helped him make that last journey.

I miss him. I know I will miss him for the rest of my life. But that's okay. I think I'm coming away from this with the idea that love is this beautiful wondrous thing, and it doesn't stop at death. We carry the people closest to us with us wherever we go. I won't be the same person I was before my father's death. But that's okay too. Because even with his death, my father made me better. He taught me to show the people that you love, that you love them unashamedly. It is the best, most meaningful thing that we can ever do.

[SallySpecs]

Thank you for that beautiful last paragraph.