How fast it all changed.

[disney212]

Your family is in my thoughts and prayers.

 

[ADLFAN]

It sounds like you have a great hospice center and that you're in good hands with the medical professionals there. I bet a hot bath would feel so heavenly to your husband. And with his medical needs fully covered, your only job will be emotionally supporting your family through this. I hope your husband sees these advantages and you can agree on these tough choices.

I am so sorry you are going through this. Like everyone has said, you are not alone and we are all feeling for you and your family. Sending love and prayers your way, sweetheart.

 

[maxaroni]

Like others have said, hospice - whether in patient or home - is a God send. They are very very helpful and comforting, at least in our experience. If at home, they will supply the hospital bed, bed pan, or whatever else is needed. They also supplied a box with morphine, Ativan and a few other things that I can’t recall.

Rodeo, my heart is breaking for you and your family.

 

[manning]

It's a long shot. I came acroos this.

http://issels.com/?gclid=EAIaIQobChMImOuhnISp2gIVCbbACh3kJgT9EAAYASAAEgJRXPD_BwE

 

[lsyorke]

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.

 

[AnnaFloridaLover]

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.

Thank you for sharing the article you wrote. It was very informative and touching. I'm very sorry for your loss.

 

[Eureka]

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.

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.

 

[gemini2727]

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'm so very sorry.

 

[antmaril]

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 very sorry for your loss.

 

[lisaviolet]

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'm so very sorry lsyorke. I can't imagine what it is like, for both of you, to overcome so much and then get a separate difficult diagnosis.

 

[karensi]

So sorry for all you are going through.

 

[rodeo65]

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 root 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.

 

[mom2rtk]

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.

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.

My friend who just went through something shockingly similar is a shining light to me. She is getting through it and so will you.

 

[Pea-n-Me]

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.

It sounds like your kids are also in some stages of denial, too, which is absolutely understandable. Things have happened so fast for you all. Have they had much interaction with their dad over the past few days? I suppose it's a tough balance trying to let them be involved, with trying to shield them from some of the harder issues. And you're worried about time, I'm sure. Will pray today you can find some peace with some of these difficult issues your facing. We're here with you.

 

[starrzone]

I am so very sorry for the situation you are in, rodeo65. Dorothy sounds like a Godsend and someone I'd want to have around if I were in the same circumstances. Hugs to all of you during this difficult time.

 

[sk!mom]

Continued prayers for peace for your DH and the strength you and you children need for the day and decisions ahead. Thank goodness for Dorothy.

 

[gillep]

I am so glad that you have someone like Dorothy on your side, I will continue thinking of you and your family and of her as well.

 

[DMRick]

So very very sorry. In the past 4 years two of my adult kids have had cancer, one leukemia and one aggressive double hit lymphoma. Both had stem cell transplants in Boston. My son started out like your husband, back pain from a slip on stairs. 6 Mos to dx. It’s been a roller coaster ride and even with help, I don’t know how my darling daughter in law kept on top of all the care and appointments. And of course both were out of work due to chemo, etc. which doesn’t help the stress. My sons children were young and really had a tough time of it. He did have very strong faith and says that got him through the days.
I find myself holding my breath with any tinge of pain either feels.
I know it’s pointless to tell you to take care of yourself. So many things running through your mind. So much to do on your own. Know many are really thinking and caring about you all.

 

[fely1st]

Following your posts and I'm more than sad and sorry. I know we don't know each other and will never do but I feel with you. I think it is the right way, that you give your husband all the support he needs and try to let ihm go the way he wants to go. Life can change so fast, we never know. Give my hugs to your childen. The only thing I can say, they should try to make "peace" with their dad.I had some very bad situations with my dad some years ago and we hardly had any contact.When he was diagnosed with cancer last year I never really had a chance to say him how much Iove him. You can not correct things like that. I hope I found the right words... Prayers for you and your family. Be strong.

 

[ksjayhawks]

rodeo65--I am so sorry to read about your dh's diagnosis. My heart aches for you and your family and everything you are going through.

I am so glad that you have Dorothy on your side. You need to have a good advocate to help you out and guide you through everything that has to be done. I have been through in-home care with my dad, nursing home care with fil and hospice care with my mom. My dad came home for two weeks, then spent his last night in the hospital where he passed peacefully. Home care, even with all the support of the home health team and hospice workers who came in, people who provided food, people who helped us out was not easy on my mom. She didn't eat much and didn't sleep well as she would hear his every movement and be right there to see what he needed. My mom was in hospice care and though it was one of the hardest decisions I have ever had to make, it was also one of the best. The hospice facility she was in was set up like a home. She had a big room that was very homelike. I was able to stay overnight with her on a sofa bed. There was a kitchen to make food--friends brought food in for us, volunteers had premade meals that we could heat up, there were snacks and drinks available. There were places to sit and visit, a shower was available for me to use. I can't say enough about the staff, so loving and caring plus they kept us informed on what was going on with her, showing us the signs, telling us what to look for.

Whatever decision you make, it will be the right one for you. Please let others help you with meals, errands, helping with your kids. You need to focus on your dh and kids right now, not the little things.

If I was to give advice:

• take pictures
• call relatives and friends and invite them to visit--if your dh is up to it and wants visitors
• facetime with relatives and friends if he wants to do this
• select a funeral home and talk with them; even if you don't need this for a long time it is nice to have it set up with names and numbers so you aren't scrambling to find one
• get power of attorney for financial and medical and a will if you don't have them
• let your kids rant, rave, cry, get mad--this is tough on them too; have a place they can go if they need to--a relative, family friend, home of a friend
• cry in the shower--I did that a lot and it helped me
• as another poster suggested, video or record stories if your dh feels up to it
• and again, let others help you with the everyday parts of life
• let yourself get mad--its okay and normal; have someone that you can talk to during this time
• if you and the kids want to stay overnight at the hospice and the hospice allows it, stay; don't let anyone tell you that you need to take a break or go home
• take care of yourself; make sure you eat and get enough fluids

Use this board as a way to vent or talk or ask for prayers as needed. We are all here for you and noone will judge you.

Praying for you and your family and others on this board who are going through this with a loved one.