My dad has been in the hospital for a week. First, it was a brain bleed and a mass. Then there was a broken vertebrae. Then there was something wrong with his heart. He was sent to Vanderbilt, in the trauma unit. He’s been in extreme pain and, up until Wednesday, we were looking at either home hospice or a nursing home.
His body has taken the decision of of our hands.
He’s impacted and getting close to perforating. He can’t have dialysis because of it. He’s not eating.
He’s in constant pain. He’s sleeping so much of the time. The doctor told me this morning that he doesn’t think he’ll be leaving the hospital.
I called my sister and my stepbrother to let them know. I asked them to contact branches of the family. I called my bonus sister because she was going to be coming out to see him tomorrow. I called my best friend.
I’m not alone. I’ve got family. I’ve got friends. I’ve got my husband and kids. I’ve got my partner and my metas. But I still feel so alone. And guilty. I feel like I’m making this decision without him. And I’m keeping some of my plans so (coloring my hair today, D&D tomorrow morning) because I need distraction. I’m fragile. I’m hurting. And I know and accept that this is part of life. But I really don’t like it.
All I can offer is my opinion that, so long as you are making what you consider to be the best decisions you can make based on the best information you have, and are not making those decisions for entirely selfish reasons, there is no need to feel guilty. Plenty of reasons for plenty of other unpleasant emotions without needing to pile guilt on top.
If this is indeed the end - as it sound like - I wish it proceeds quickly and as relatively painless as possible for all involved.
Remember that your personal physical needs and emotions are important (tho perhaps not the MOST important at any moment.) And do not let anyone tell you how you ought to feel or act.
I’m so sorry–that’s so hard. You’re doing all the things, and making the best decisions for him. I hope your siblings can join you soon, and that his passing is peaceful.
I know having a voice on the internet say so won’t make the guilt go away, but I’m going to say it anyway: you have no cause to feel guilty as long as you’re following whatever wishes your father was able to express earlier or can express now, and going on the basis of the best information the doctors can give you. And if those contradict just do the best you can.
After all:
You have no way to just make this go away and restore him to health. That isn’t possible. If what needs to be done now is to decide how he dies: recognizing that necessity isn’t, or shouldn’t be, a cause for guilt.
I would support doing whatever will get him the greatest diminishment of pain. And I think calling friends/relatives, as well as delegating them to call others, is the right thing to do. But you’re the one who’s there, and you’re the one who knows him; and as Dinsdale says:
I have no advice, my friend, just lots of sympathy. Listen to the folks here about the uselessness of guilt, for they are wise. Praying for your strength and comfort as you say goodbye.
After months or even years of making medical decisions and consulting doctors about the best course and agonizing over the pros and cons of different treatments, it can be really hard to just accept that at the end, it’s out of everyone’s hands. I hope that your family and friends can support you and each other through this. You’ve been a good daughter.
One mistake we think our SIL (PoA) made - when MIL was in hospice, SIL declined certain painkillers, “because they would hasten her death.” Make your own call, but I question the value of extra moments/days of incoherent agony.
When/if it gets to that point, make full use of hospice services. They are wonderful, professional, and have seen it all. They provide counseling for family members, acknowledging the stress death can put on survivors.
It’s a part of life, but it’s the hardest part. I’m sorry you’re going through this, and I wish you all the strength and love you need to get through it. He’s so lucky to have you.
I’m really sorry. I have no good advice, other than you’re doing the best you can in a hard situation, so go easy on yourself. Definitely take that “you” time to restore yourself and don’t feel guilty about it.
As you said earlier, his body has appears to have made the most important decision. While the decisions you have to make are hardly window dressing, in the end they matter far less than the one that’s already been made.
I’m so sorry. You have no cause to feel guilt. The best you can do is to make his journey as smooth and comfortable as possible, which is what you’re doing.
I agree. When my mother had sepsis, we gave the OK to give her morphine, even though we knew it might hasten her death by a day or two. She suffered agonizing pain until then. With the morphine, she got just the death she’d wanted: asleep but vaguely aware that all her children were around her, telling stories and laughing.
I have no proof but have to believe that great pain also hastens death.
All you can do is the best you can do. Be at peace knowing that he loves you, and knows you’re doing your best for him. I’m sorry you’re going through this.
I understand on my own level, having gone through something similar with my father last October.
We too used hospice, in the hospital at first and then at their free-standing facility when a bed opened up. They were great, and nobody tried to get us to do anything we didn’t want to do. Dad had a massive cerebral hemorrhage and there was to be no recovery from it. He was 90 years old.
My mother was getting very low dose morphine. Shortly before she went into coma, but after she became unable to talk, she was moving around in apparent distress. I asked the nurse to get her a morphine dose. The nurse said it wasn’t time yet, and refused to give the dose slightly early on the grounds that it might make her die slightly sooner.
I threw a fit (well, a relatively polite one) and they got the doctor; who said to me “You shouldn’t have to put up with that” and got Mother her morphine. And I don’t think we had that nurse again.
I have been through this with each of my parents and I am very sorry for your pain and loss. But a natural end to life is something that happens to all. Eventually there will be nothing we can do to stop it and there is nothing for you to feel guilty about. Make him as comfortable as possible, and say to him all the things you need to say-whether it’s goodby, I love you, I’m sorry for that time when I was a snotty teenager, whatever you want him to know and whether or not he can hear you. Then take comfort in the thought that you did the best you could for him, which is all any of us can do. Again, so hard and I am sorry for your pain.
Thank you, everyone, for your caring and kind words. I’ve got good news in that it looks like Dad has turned the ship around and is on his way to feeling better. My sister is down to see him for a long weekend, which also helps, I think. He’s still impacted, but the dialysis isn’t causing the pain it was and there had been a little… uh… movement… on the impaction. His back is still in a lot of pain and that’s the next thing that, hopefully, he’ll have addressed.
As much as I’m glad that Dad is going to be ok, the hardest thing for me right now is the back and forth on whether I’ll be losing him or not. Over the last year, I’ve been on a Rollercoaster of losing him and having more time with him at least half a dozen times. Emotionally, I’m drained. Especially because it makes me feel like a fool to tell family, “He’s dying, say your good-byes. Oops. Never mind. He’s doing fine now.” I worry that people with think I’m the little girl crying wolf.
So for now, we’re just working towards getting Dad to be well enough for back surgery and looking into rehab facilities for when it’s done. And try to get through to him that he may not ever make it home again because he’s not well enough to live alone. There’s just so much heavy stuff on my mind right now.