How fast it all changed.

[ENJDisneyFan]

I often want to comment but can't find the right words. Just heartbroken for you and your family.

If any sliver of good can come from this terrible situation, I will say that reading this thread has given me hope for humanity. It's so beautiful to see a group of relative strangers come together in support of someone they don't "know " in the real world and offer such kind words and messages of love. Often times here on the Dis we find ourselves in heated debates over things that are completely unimportant in the grand scheme. This thread has shown such great compassion and for that I'm grateful to be here with all of you.

 

[rodeo65]

Excited family - I'm with you and praying for you and your family. I understand the "work" of dealing with this disease. The appointments, trying this, trying that. I so hope your husband has success with treatment.

It feels like all of that is over for us. Well, it is over for us, but now I feel it. There is nothing more to be done. No more things to try, results to wait for, doctors to talk to. I now just sit beside his bed and listen to his shallow breathing. Yesterday he had removed his oxygen but mid way through the day when I asked if he needed it he said yes and let me put it back. He is still resisting the pain medication with some regularity. Cries out when it is administered through the butterfly. The nurse said it stings going in, so I guess he is just reacting to that, not understanding that it will help him with pain.

He had the nurse call me again last night (this morning) - was confused about where he was. I talked to him for a minute or two and asked him to let them give his medication to make him feel better and I'd see him today. He said ok, but when I called the nurse's station 30 minutes later he still was refusing. I just wish this was easier for him. I think it's the speed of progression, not understanding what happened, medication that has led to confusion, toxins in his system...all these things that are not allowing him peace.

He ate nothing yesterday, and only a sip or two of water and another couple of ginger ale. He was sleeping for much of the day. It seems to be at night he's most restless. The nurse did say he had a good amount of ginger ale after I left last night. My parents did get to see him yesterday. He was asleep when they brought the kids and just poked their heads in. Initially, when I told my dad that DH was saying no visitors he said that was fine, he'd rather remember him coherent and interactive from a couple of weeks ago. But I also think he needed the closure when he got there. Since DH was sleeping and covered and decent at the time, I said it was fine and he and mom just stood in his doorway for a minute.

My brother is on his way back today. He is driving up with his kids and his wife will fly up Tuesday. I thought he had changed plane tickets to FL where they were supposed to visit our parents this week for tickets here instead. Now I wonder if he's driving with the intent that he will have those tickets in another short time for a service. The nurse yesterday gave me a list of crematoriums. I asked what happens to him after his passing. For some reason, TV I guess, I thought the coroner would pick him up, but she said no, because it's an anticipated death, the coroner does not attend. Since we are doing a celebration of life it wouldn't be a funeral home either, but legally he has to be moved by one of those three, so I put dad on calling the crematoriums and getting that sorted out.

I'm warring with myself right now about his mother and brother. They want to come back. He has said no several times this week when I've brought it up. It's near the end and I'm torn between honouring his wishes and giving his family closure. My parents, I trusted to just stand quietly in the doorway and then leave. His family first of all had strain always, and prior to this there had been years of estrangement. He called them when he was diagnosed and said he had a nice visit when they first came to the hospital. The next day, I was in the room and he was short with them, his mom fussing and constantly firing questions at him and complaining about the nursing staff etc. He was relieved when they left. She is prone to histrionics and he and his brother have definitely had plenty of issues too; everything is always about him. Even with meds and things DH was dealing with and discussing with them, he would say things like "well if you're dealing with this just imagine how it was for me when I dealt with..."

I feel like I should call and tell them they can come to the hospice and wait in the living room or family room or quiet room and when I know he's asleep let them do as my parents did. I'm just slightly afraid there would be drama and he'd be disturbed and then he'd know I went against his request. I'm still feeling that would be the kind and right thing to do for them but our whole marriage he'd been very clear that we were his family and he'd left his family of origin behind.

 

[Pea-n-Me]

It's tough, Rodeo, but I think this is the time to focus on what your husband wants. (I do appreciate, though, that you're thinking of others, but keep what your husband wants at the forefront as much as you can, just as you would want him to do if, God forbid, the situation was reversed.)

 

[MamaBelle4]

It's tough, Rodeo, but I think this is the time to focus on what your husband wants. (I do appreciate, though, that you're thinking of others, but keep what your husband wants at the forefront as much as you can, just as you would want him to do if, God forbid, the situation was reversed.)

I agree with Pea-n-me.

I wish I could say more than you and your family are in my thoughts and prayers. But you are. I am so very sorry you're going through this.

 

[leebee]

I don't think there's a right answer to this. Ask your husband again, it's all you can do. This is hard enough for him; if seeing his mother and brother is at all stressful... well, maybe they can't come. Explain to them why they can't come, that he cannot tolerate the visiting, stress of trying to stay awake, discussing things, etc. Maybe they'll understand?

I agree with Pea-n-me, but I also think of his mother, knowing how sick her child is; my heart would be breaking. If you are thinking of letting them come up, make sure you are CLEAR that they aren't to discuss or ask or anything... just visit. Then follow with your plan to keep them in the living room area until your DH is resting, so they can, literally, just see him. If they can't stick to your ground rules, gently explain that they can't come, because your husband cannot withstand excitement or agitation AT ALL.

 

[ENJDisneyFan]

I don't think there's a right answer to this. Ask your husband again, it's all you can do. This is hard enough for him; if seeing his mother and brother is at all stressful... well, maybe they can't come. Explain to them why they can't come, that he cannot tolerate the visiting, stress of trying to stay awake, discussing things, etc. Maybe they'll understand?

I agree with Pea-n-me, but I also think of his mother, knowing how sick her child is; my heart would be breaking. If you are thinking of letting them come up, make sure you are CLEAR that they aren't to discuss or ask or anything... just visit. Then follow with your plan to keep them in the living room area until your DH is resting, so they can, literally, just see him. If they can't stick to your ground rules, gently explain that they can't come, because your husband cannot withstand excitement or agitation AT ALL.

I agree with this. In this situation, a compromise, I think, would be the best solution. Allowing his family to visit quietly, as your parents did, would give them the closure they need while still respecting his wishes.

 

[Mokat76]

Aw, Rodeo, I’m so sad for your family and I feel so for the decisions you’re trying to make. Do what’s right for you and your husband, not his estranged family. They visited and you saw how they were. You can’t expect better behavior now; they’ll be worse. They, too, will be running on heightened emotions.

IF, and it’s a big if, you let them come, will hospice staff help control them? Can they advise you on how best to handle them? If not, you might be better to honor your husband’s wishes. None of you needs the extra strain. Surround yourself with as much love and peace as you can. Your sweet family needs it more now than ever.

As always I send all my prayers and thoughts your way.

 

[Pea-n-Me]

I don't think there's a right answer to this. Ask your husband again, it's all you can do. This is hard enough for him; if seeing his mother and brother is at all stressful... well, maybe they can't come. Explain to them why they can't come, that he cannot tolerate the visiting, stress of trying to stay awake, discussing things, etc. Maybe they'll understand?

I agree with Pea-n-me, but I also think of his mother, knowing how sick her child is; my heart would be breaking. If you are thinking of letting them come up, make sure you are CLEAR that they aren't to discuss or ask or anything... just visit. Then follow with your plan to keep them in the living room area until your DH is resting, so they can, literally, just see him. If they can't stick to your ground rules, gently explain that they can't come, because your husband cannot withstand excitement or agitation AT ALL.

I understand. But here are my thoughts, for what they're worth.

Let's re-look at what Rodeo said:

I'm warring with myself right now about his mother and brother. They want to come back. He has said no several times this week when I've brought it up. It's near the end and I'm torn between honouring his wishes and giving his family closure. My parents, I trusted to just stand quietly in the doorway and then leave. His family first of all had strain always, and prior to this there had been years of estrangement. He called them when he was diagnosed and said he had a nice visit when they first came to the hospital. The next day, I was in the room and he was short with them, his mom fussing and constantly firing questions at him and complaining about the nursing staff etc. He was relieved when they left. She is prone to histrionics and he and his brother have definitely had plenty of issues too; everything is always about him. Even with meds and things DH was dealing with and discussing with them, he would say things like "well if you're dealing with this just imagine how it was for me when I dealt with..."

I feel like I should call and tell them they can come to the hospice and wait in the living room or family room or quiet room and when I know he's asleep let them do as my parents did. I'm just slightly afraid there would be drama and he'd be disturbed and then he'd know I went against his request. I'm still feeling that would be the kind and right thing to do for them but our whole marriage he'd been very clear that we were his family and he'd left his family of origin behind.

It's clear what her husband's wishes are. Those wishes were made when he was in his right frame of mind. Right now, he is suffering from delirium, in extreme pain, and, sadly, navigating the dying process, so it's absolutely not right to ask anything of him, including changes of the wishes he's been crystal clear on already.

As a mother and wife myself, this makes me sad. But it sounds like they had years to try to fix their relationship, and that didn't happen for whatever reason. Bringing that dysfunction to his hospice bed now, when he's asked that that not happen, just isn't right, since it's supposed to be peaceful for him. They don't bring peace, they bring chaos. What happens if he wakes up and sees them, how would he feel? It their "eyeballing him" worth his displeasure at this time? How would Rodeo live with that regret? It's also unlikely they would comply with requests, as Rodeo herself worries, and if there was a problem, that would cause additional stress and guilt, which she doesn't need right now on top of everything else.

This is her husband's choice, not hers. She has been entrusted to carry out his wishes.

 

[Pea-n-Me]

Aw, Rodeo, I’m so sad for your family and I feel so for the decisions you’re trying to make. Do what’s right for you and your husband, not his estranged family. They visited and you saw how they were. You can’t expect better behavior now; they’ll be worse. They, too, will be running on heightened emotions.

IF, and it’s a big if, you let them come, will hospice staff help control them? Can they advise you on how best to handle them? If not, you might be better to honor your husband’s wishes. None of you needs the extra strain. Surround yourself with as much love and peace as you can. Your sweet family needs it more now than ever.

As always I send all my prayers and thoughts your way.

I liked your post, but to answer your question.

It would be unfortunate to take staff away from caring for dying patients to deal with a known difficult family.

Think of it - your nurse can't tend to your family member because he or she is down the hall dealing with them.

If it comes to it, they will be asked to leave. Which is never pretty, and stressful for all involved.

 

[hopemax]

If they are local enough. And if the plan was just for them to watch him from the doorway. Why not wait until after? The hospice house told us to take as much time with my Mom as we needed to say goodbye, after. So when it happens, call them to come.

 

[rodeo65]

Thanks Pea-n-me. You helped focus it for me. They have seen him. I was thinking as a mother, not as a wife.

His family is not local.

Our ice storm seems to have subsided enough for me to go see him, so I'm headed over.

 

[gillep]

I am in complete agreement with Pea and the well thought out advice that she has given. As always, my thoughts are with your family.

 

[mamamary]

Thanks Pea-n-me. You helped focus it for me. They have seen him. I was thinking as a mother, not as a wife.

His family is not local.

Our ice storm seems to have subsided enough for me to go see him, so I'm headed over.

Safe travels to you.

 

[Pea-n-Me]

Thanks Pea-n-me. You helped focus it for me. They have seen him. I was thinking as a mother, not as a wife.

His family is not local.

Our ice storm seems to have subsided enough for me to go see him, so I'm headed over.

Peace be the journey.

 

[Cruisin]

Our ice storm seems to have subsided enough for me to go see him, so I'm headed over.

I was wondering if the ice storm was going to keep you from getting out. Everything is melting now where we are .

I wish for a good day for you and your family.

 

[TavieP]

Thanks Pea-n-me. You helped focus it for me. They have seen him. I was thinking as a mother, not as a wife.

His family is not local.

Our ice storm seems to have subsided enough for me to go see him, so I'm headed over.

I think you’ve made the right decision and although it is difficult, honoring it is one of the few gifts you can still give to your husband.

I check this thread every day. Thinking of you all.

 

[tink1970]

Rodeo-prayers for you and your family. You have shown true grace under pressure and love for your husband and your family. Please know that we are all here for you in spirit and may peace surround you in these dark and sad days.

 

[Ngwira]

I am praying so hard for your family. Know that you have touched more lives with your grace and quiet strength than you will ever know.

 

[DMRick]

I think it’s a decision you need to make with your kids who are related to his mom. Often when people are close to dying, the reasons they didn’t get along with a family member may no longer matter and both sides may want to fix it before it can no longer be fixed. There are reasons someone would not have feelings for their mom, I know, and maybe you have those reasons, but you don’t want to regret your decision once it’s too late. Just another opinion.

 

[lsyorke]

At this point I think for you it has to come down to "what you can life with". If your OK with his Mom and brother not coming there, then that's the answer. If it's going to weigh on your mind, then you do what you feel is right. You hold the cards in the decision making right now. There are no wrong answers, just decisions that you're ok with. Don't second guess, just go with your heart.

Know that you are in my thoughts every day. Keep breathing.