Rodeo, my heart goes out to you during this horrible time. Sadly, I've been there and it's the hardest thing I've even done. Know that you aren't alone and many have you in our thoughts. I lost my DH 4 weeks after his gastric cancer diagnosis. You will find the strength to get through this and do what is right for him and your family. I wrote this article after losing Bill and I think it hits home with many going through this.
https://www.nurse.com/blog/2011/01/27/end-of-shift-a-chronic-life-2/
You're never alone as long as the Dis is here, and we always are.
I am so sorry to hear this. I don’t even know what else to say. I don’t pray but I am thinking about you.Ok, I need to stop saying worst day ever. Apparently the universe is determined to prove me wrong. I was at the hospital where the palliative nurse and social worker came to visit us. His latest blood work from yesterday showed marked deterioration since three weeks ago. She said she can see the changes in his face. He has "that look." She said she never says never but is not hopeful that he will even regain the strength to have chemo. His is very aggressive.
So the morning consisted of discussions about hospice care and assisted end of life. Which I had no idea was even legal here but learned that yep, legal for terminal diagnoses. He does not want that route, but we will be meeting at the start of the week to see if he has improved at all; if he might like to try home again, which he doesn't seem to, if he wants hospice or if he needs to remain in hospital. He seemed to like the way the hospice house sounded and seems to be trying to reduce the burden on me. I said he needs to be where he feels best.
He gave me everything I need to shut down his business. We discussed what arrangements he wanted, which we have never really had a serious discussion about. He is choosing cremation. I honestly cannot believe all of this. I can't believe the speed. Twenty three days ago he went in thinking he had a back issue or maybe appendix.
I have to go back soon because his mother, who he has been estranged from for decades is on her way with his brother who is not altogether stable. When their dad was dying four years ago, they had to call the police bc he assaulted one of the doctors. I've alerted the hospital to that and they said security will be available should we need it. DH doesn't even want his brother there but his mom doesn't drive and that's who is bringing her.
Rodeo, my heart goes out to you during this horrible time. Sadly, I've been there and it's the hardest thing I've even done. Know that you aren't alone and many have you in our thoughts. I lost my DH 4 weeks after his gastric cancer diagnosis. You will find the strength to get through this and do what is right for him and your family. I wrote this article after losing Bill and I think it hits home with many going through this.
https://www.nurse.com/blog/2011/01/27/end-of-shift-a-chronic-life-2/
You're never alone as long as the Dis is here, and we always are.
Rodeo, my heart goes out to you during this horrible time. Sadly, I've been there and it's the hardest thing I've even done. Know that you aren't alone and many have you in our thoughts. I lost my DH 4 weeks after his gastric cancer diagnosis. You will find the strength to get through this and do what is right for him and your family. I wrote this article after losing Bill and I think it hits home with many going through this.
https://www.nurse.com/blog/2011/01/27/end-of-shift-a-chronic-life-2/
You're never alone as long as the Dis is here, and we always are.
Rodeo, my heart goes out to you during this horrible time. Sadly, I've been there and it's the hardest thing I've even done. Know that you aren't alone and many have you in our thoughts. I lost my DH 4 weeks after his gastric cancer diagnosis. You will find the strength to get through this and do what is right for him and your family. I wrote this article after losing Bill and I think it hits home with many going through this.
https://www.nurse.com/blog/2011/01/27/end-of-shift-a-chronic-life-2/
You're never alone as long as the Dis is here, and we always are.
My heart hurts for you. More prayers coming your way since it's all I can do. You will get through this. Not in the way you want, but you will get through this.Your article touched me lsyorke, thank you for sharing it.
Yesterday was quite a roller coaster. If you'd have asked me around noon, I'd have said we were looking at the last few days. He was miserable, refused the dilaudid, said it gave him panic attacks again. Nurses on the floor yesterday were from an agency and really just not attentive. He waited 30 minutes for one to come when he rang while having a panic attack and then waited again while she went to get the Ativan. He kept saying how the care in the ER and on the floor he was on before was so much better and he couldn't live like this. Back to snapping and rocking. He was talking about the assisted death route.
I left a message for Dorothy, the palliative NP, who doesn't work on the weekend, but she responded and after hearing everything said she'd come in and meet me there. She was so amazing. She talked to him for probably 30 minutes getting to the route of the anxiety. He eventually considered that it may not be the medication but the situation itself. She did switch him to morphine rather than the hydromorphone because when she checked it does have rare reports of causing anxiety. She also prescribed a different longer acting anti-anxiety that I can't remember the name of for overnight and then the Ativan as needed through the day. He was so much more settled after talking to her - she has been a godsend! He texted me this morning and said it had worked and he's had a better night!!
She also got me an appointment to tour the hospice centre today at 1pm. I had called yesterday because he asked me to get him out of the hospital but he doesn't want to come home. Said he wants hospice care. When I called them initially, they said I needed a referral and wouldn't be able to come tour until next week. Dorothy said no way and called them for me. The kids and I are going to see it together, also with one of my friends. Both of the kids are in the bargaining phase. They're googling treatments and trying to find anything that he can do to live. DD was quite angry yesterday and was saying he can't just give up, she gets panic attacks too and he needs to just deal with them and take the medication that will help. I'm having trouble getting her to understand that medication will make him comfortable, not prolong his life. She gets it but doesn't "get it." That is harder for me than anything. I can't give them what they need - their dad back for the amount of time they should have had with him. DS was actually in the process of cleaning his computer room when I got home yesterday. He said he wouldn't let dad down anymore. I want my old life back. Slobby kids included.
It's very unfortunate that agency nurses are manning the floor. I'm sure they're just trying to hold their heads above water, not knowing the systems very well and taking longer to do even the simplest things. Not fair to the patients! (His care, if in a well run place, could be so much better. ) I'm sorry he had that experience, but glad that his NP is responsive and attentive. That is a big positive, here. Let us know what you think of the hospice center when you can later. I hope you like it.Your article touched me lsyorke, thank you for sharing it.
Yesterday was quite a roller coaster. If you'd have asked me around noon, I'd have said we were looking at the last few days. He was miserable, refused the dilaudid, said it gave him panic attacks again. Nurses on the floor yesterday were from an agency and really just not attentive. He waited 30 minutes for one to come when he rang while having a panic attack and then waited again while she went to get the Ativan. He kept saying how the care in the ER and on the floor he was on before was so much better and he couldn't live like this. Back to snapping and rocking. He was talking about the assisted death route.
I left a message for Dorothy, the palliative NP, who doesn't work on the weekend, but she responded and after hearing everything said she'd come in and meet me there. She was so amazing. She talked to him for probably 30 minutes getting to the route of the anxiety. He eventually considered that it may not be the medication but the situation itself. She did switch him to morphine rather than the hydromorphone because when she checked it does have rare reports of causing anxiety. She also prescribed a different longer acting anti-anxiety that I can't remember the name of for overnight and then the Ativan as needed through the day. He was so much more settled after talking to her - she has been a godsend! He texted me this morning and said it had worked and he's had a better night!!
She also got me an appointment to tour the hospice centre today at 1pm. I had called yesterday because he asked me to get him out of the hospital but he doesn't want to come home. Said he wants hospice care. When I called them initially, they said I needed a referral and wouldn't be able to come tour until next week. Dorothy said no way and called them for me. The kids and I are going to see it together, also with one of my friends. Both of the kids are in the bargaining phase. They're googling treatments and trying to find anything that he can do to live. DD was quite angry yesterday and was saying he can't just give up, she gets panic attacks too and he needs to just deal with them and take the medication that will help. I'm having trouble getting her to understand that medication will make him comfortable, not prolong his life. She gets it but doesn't "get it." That is harder for me than anything. I can't give them what they need - their dad back for the amount of time they should have had with him. DS was actually in the process of cleaning his computer room when I got home yesterday. He said he wouldn't let dad down anymore. I want my old life back. Slobby kids included.