How fast it all changed.

[flyingdumbo127]

I also pray for you throughout the day, dear Rodeo. As I said via PM I don't post much anymore on these forums but have to tonight. Much peace to you and your family. I am so very sorry :'/ May each of you know God is with you throughout and so are all of us thanks to Him bringing us together and your grace in allowing us to support you. We care and you please take care.

 

[robinb]

I am so sorry {{hugs}}. You and your family are in my thoughts.

 

[hopemax]

There were a few other things I wanted to share, but I didn't want to post them too early. Let you take the best each day could give you as each day came. But now that you are facing the final end.

Have you talked to the hospice nurses about what the final days and hours will look like? My Mom, was the first time I had to watch someone dying. And I didn't know what it would look like, or more importantly what it would sound like. When the body shuts down, respiration changes and as unsettling as everything before was, that was even more so. Since you have kids who are old enough to recognize the difference, consider having a family talk (just you, and them, and other adults who might be there) about who wants to be there at the very, very end. If anyone.

My Mom passed overnight, and we weren't there. When we left hospice that evening, my Dad, husband and I talked about should we stay or go. And we all decided that we were there for her as much as we could, but leaving we had to do for us. Because the only thing we could imagine that would be worse than what the final few hours were, was experiencing the moment where it ended. That was a memory we chose not to have. But for some people, it's very important for them to be there, as a previous poster said, "so their loved one could die in their arms." I just wanted to post that it's okay, not to want to have that memory.

As we were driving back to the house that night, my husband and I were in one car and my Dad in another. On the drive home, there was the most beautiful intense sunset that I had ever seen in the area where my parents lived. I commented on it to my husband. When we got to the house, my Dad asked if we noticed the sunset. My Mom loved sunsets. So I choose to believe that that was her goodbye, and she understood.

There is no right way to do this, and you are doing a beautiful job. Many hugs to your family.

 

[Psychodisney]

Rodeo, I too have been following your journey. You and your children are in my thoughts and prayers. Definitely a reminder of how precious life is.

 

[maxaroni]

So very sorry.

As far as the agitation, we were told when mom was in hospice, it part of the dying process and we had Ativan to give to her. Hospice stressed pain control and comfort. Mom was home on hospice, not at a facility. My mom came home on Sunday night and passed away in the early morning hours on Wednesday. We had liquid morphine and liquid ativan.

None of this is easy. I really have no words but sending lots of love and prayers. (((HUGS)))

 

[Kewz1]

Praying for you and your family.

 

[maxaroni]

There were a few other things I wanted to share, but I didn't want to post them too early. Let you take the best each day could give you as each day came. But now that you are facing the final end.

Have you talked to the hospice nurses about what the final days and hours will look like? My Mom, was the first time I had to watch someone dying. And I didn't know what it would look like, or more importantly what it would sound like. When the body shuts down, respiration changes and as unsettling as everything before was, that was even more so. Since you have kids who are old enough to recognize the difference, consider having a family talk (just you, and them, and other adults who might be there) about who wants to be there at the very, very end. If anyone.

My Mom passed overnight, and we weren't there. When we left hospice that evening, my Dad, husband and I talked about should we stay or go. And we all decided that we were there for her as much as we could, but leaving we had to do for us. Because the only thing we could imagine that would be worse than what the final few hours were, was experiencing the moment where it ended. That was a memory we chose not to have. But for some people, it's very important for them to be there, as a previous poster said, "so their loved one could die in their arms." I just wanted to post that it's okay, not to want to have that memory.

As we were driving back to the house that night, my husband and I were in one car and my Dad in another. On the drive home, there was the most beautiful intense sunset that I had ever seen in the area where my parents lived. I commented on it to my husband. When we got to the house, my Dad asked if we noticed the sunset. My Mom loved sunsets. So I choose to believe that that was her goodbye, and she understood.

There is no right way to do this, and you are doing a beautiful job. Many hugs to your family.

I so hear you. My mom came home on hospice and was in the process before coming home. My dad had to make the decision to end dialysis before she entered hospice, so it took a couple of days for him to make that final decision. I was in the room with my inlaws but that was quite awhile ago. I wish I was a little more aware of how the body changed as it goes through the actively dying process. In the hospital one day she was so hot but no fever. Two days later, she was telling me she was going on a trip to England with my dad, to a wedding. They would be traveling for 2 weeks but didn’t know the people getting married. The following day, she repeated that but then was calling my dad, her dad.

The day the dialysis stopped, she was fairly out of it. Right before the ambulance came to take her home, she got very alert and talked to my dad. When home, I noticed that her skin was cold, especially her arms and legs. I asked her if she was cold and she said no. Her skin was getting mottled and didn’t realize that that was part of it as well. All I was told was the breathing.

Hospice told us that many times, the dying person will hang on when loved ones are there but pass when everyone is out of the room. So, don’t be upset if that happens.

You are so correct, no right way.

 

[ronandannette]

...They believe we are in the final days. I had come to that conclusion also. The kids want to be there at the end, so I'm allowing it. Just need to get a better gauge when to bring them since both are sick. At some point it won't matter but I still feel like for another day or two it would. I hope they have the medication adjusted enough now that the kids won't see the agitation...

Please talk all this through with the hospice nurses - they are experts in managing all facets of these situations, especially in knowing (and gently telling you) when "it' time". God bless you all; as has already been said so many times, my heart is aching for you.

 

[rodeo65]

Combative is definitely the word of the day.

The nurses did tell me what kinds of things I may see at the end. They mentioned the mottled skin and the respiration. The day nurse was still there when I went back this evening. She said it would be best to bring the kids tomorrow, so that is our plan. DH is no longer eating. He is drinking very small amounts (he never finished the cup that was there for the whole afternoon) and I think will still chew on a Popsicle but not finish it. They have started using a sponge to wet his lips and mouth.

They now have him on a pump for his anti-anxiety medication - can't remember what this one is called. Hopefully that will do a better job of keeping him on an even keel.

It was a very up and down day. He wants me there, but then when I am he's pretty combative with me. Apparently he actually got out of bed last night, setting off his alarm, but made it to the window before the nurses got down to his room (he's the last one on the hall.) When they asked what he was doing, he said he'd been dreaming that he was supposed to meet me for danishes. Not anything we've ever done in our lives, but I had bought a package of them for the kids the week he was home from the hospital, so I guess that's what his mind is working with. He said he guessed he wasn't supposed to meet me and would go back to bed.

Even though he wants me there, he gets angry with because I won't help him get up and dressed and leave. I started off being more playful about it, but he wasn't responding to that and kept trying to get up - set the alarm off about nine times through the afternoon and evening. Finally I became more firm - "nope, sorry, I know you'd like to get up but it's for your safety. You're not strong enough to stand and walk on your own." That's when he got really mad. Oooohhh - if things were what they used to be and he wasn't working away at dying I'd have given it right back to him. He is definitely fighting it, which is very hard to watch. I worry about the kids seeing him like that, but both still say they want to be there. At least there are other areas they can go if it's too much - living room, family room, quiet rooms.

Soon after I got home tonight he called DD on her phone. She brought it to me and we talked for a few minutes. He seemed ok, although confused. I said we'd all be there tomorrow and he needed to get a good night's sleep so he'd be awake for us tomorrow. After he hung up I called the nurse. She said whatever I told him did the trick. He'd been agitated and angry with them for not letting him get dressed and go but calmed after I spoke with him. He refused his 10:00 pain relief but allowed it after we spoke which was around 11:45. So, pretty late and he was likely in a fair amount of pain by then. I'm going to discuss a pump for that also tomorrow. So I guess he's angry with whoever is with him and in his mind stopping him from what he wants to do.

I have been told that about the person hanging on until everyone leaves the room, but good reminder that I need to let my kids know that. That they may not be right there for his last breath and that's ok.

 

[Pea-n-Me]

Combative is definitely the word of the day.

The nurses did tell me what kinds of things I may see at the end. They mentioned the mottled skin and the respiration. The day nurse was still there when I went back this evening. She said it would be best to bring the kids tomorrow, so that is our plan. DH is no longer eating. He is drinking very small amounts (he never finished the cup that was there for the whole afternoon) and I think will still chew on a Popsicle but not finish it. They have started using a sponge to wet his lips and mouth.

They now have him on a pump for his anti-anxiety medication - can't remember what this one is called. Hopefully that will do a better job of keeping him on an even keel.

It was a very up and down day. He wants me there, but then when I am he's pretty combative with me. Apparently he actually got out of bed last night, setting off his alarm, but made it to the window before the nurses got down to his room (he's the last one on the hall.) When they asked what he was doing, he said he'd been dreaming that he was supposed to meet me for danishes. Not anything we've ever done in our lives, but I had bought a package of them for the kids the week he was home from the hospital, so I guess that's what his mind is working with. He said he guessed he wasn't supposed to meet me and would go back to bed.

Even though he wants me there, he gets angry with because I won't help him get up and dressed and leave. I started off being more playful about it, but he wasn't responding to that and kept trying to get up - set the alarm off about nine times through the afternoon and evening. Finally I became more firm - "nope, sorry, I know you'd like to get up but it's for your safety. You're not strong enough to stand and walk on your own." That's when he got really mad. Oooohhh - if things were what they used to be and he wasn't working away at dying I'd have given it right back to him. He is definitely fighting it, which is very hard to watch. I worry about the kids seeing him like that, but both still say they want to be there. At least there are other areas they can go if it's too much - living room, family room, quiet rooms.

Soon after I got home tonight he called DD on her phone. She brought it to me and we talked for a few minutes. He seemed ok, although confused. I said we'd all be there tomorrow and he needed to get a good night's sleep so he'd be awake for us tomorrow. After he hung up I called the nurse. She said whatever I told him did the trick. He'd been agitated and angry with them for not letting him get dressed and go but calmed after I spoke with him. He refused his 10:00 pain relief but allowed it after we spoke which was around 11:45. So, pretty late and he was likely in a fair amount of pain by then. I'm going to discuss a pump for that also tomorrow. So I guess he's angry with whoever is with him and in his mind stopping him from what he wants to do.

I have been told that about the person hanging on until everyone leaves the room, but good reminder that I need to let my kids know that. That they may not be right there for his last breath and that's ok.

 

[minniecarousel]

My dear Rodeo - if the tears of complete strangers could comfort you, you would be fine. I know it doesn’t work that way though. Constant prayers for you and your family.

 

[Mokat76]

What a tragic and awful ordeal you’re going through. I hurt for you. You’re having to absorb so many things from so many directions. As you said to start this thread, how fast it all changed. There’s been no time for you and your loved ones to absorb this; you’ve only been able to react to blow after blow after blow.

Few in the world know your pain and those who do wouldn’t wish it on anyone. I know you’re strong on the outside, but I know you’re screaming on the inside at the utter horror of this. How can this be happening? The unfairness of this horrible thing just in unimaginable, but you’re in it every minute.

I’m not an overtly religious person, but I believe in the power of prayer. A friend shared this quote with me recently as I began a much different cancer journey than the one you’re on. It has brought me some comfort. I hope I don’t offend. “The steadfast of mind You will keep in perfect peace, because (s)he trusts in You.” Isaiah 26:3

Hang on, Rodeo. Cling to whatever helps you through this. Know that your Dis family is here with you wishing we could reach past our virtual connection to comfort you IRL.

 

[Disney Doll]

My heart hurts for you rodeo.
Not sure how they’re giving him pain med but many come in a patch form. The medicine is absorbed through the skin and because it consistently on, the levels of medication in the system don’t go up and down quite so much, so pain control is more “even keeled”.
It might not work for him but just another thought. Pain meddrips give good pain control but at a certain point they catch up to the person and they become sedated and unable to respond. That’s not necessarily a bad thing but just something to be prepared for when they start the drip.

God bless you all. My prayers for your family continue.

 

[antmaril]

Rodeo. Again, I want to say how sorry I am that you and your family are going through this.

On the day my husband passed, his mother and brother had been there most of the day. They went home about 5:00 p.m. My son, who was in college at the time, arrived at the hospital around 6:00. About 7:00, I sent my son to the cafeteria to get some dinner. At that point, it is just me in the room. My husband had not been conscious in at least a week or so. Not really in a coma, but drug induced, I think.

He passed at 7:50 with me holding his hand as I had been since we were 15 years old. The Hospice chaplain told me that he would decide who would be there when it happened. Told me (and the family) not to feel guilty if we weren’t there when he passed. As it turns out, he chose me. It is difficult to put into words what I was feeling at that moment.

I continue to keep you in my prayers. None of this is easy.

 

[indimom]

Rodeo, I continue to think of you, your husband, and your children. I am praying for all of you.

 

[Dentam]

I'm continuing to think of you and your family.

 

[gillep]

 

[HeyIt'sMe]

Dear Rodeo - This is the first time I've posted to your thread but I have been reading and following along since your first post. I am so sad for you and your family and my heart breaks for you.

Cancer is such an awful disease and I watched it claim both of my parents. My dad was 48 when he died from kidney cancer and my mom was 61 when she died from pancreatic cancer.

When my dad died I was 16 years old (my siblings were 17, 14 and 6) and at that age I was really only aware of my grief and sadness. Now that I am an adult (and a parent myself) I think about my mom and how hard things must have been for her. She must have been so scared that she was being left alone to raise 4 kids on her own. But my mom was an amazing woman and I am so blessed to have had her. You sound like a strong, loving, amazing mom too and I pray that you and your children will move on with many blessings to come.

When my mom was diagnosed with her cancer I was her primary caregiver. She died less than 8 months after her diagnosis. It was such a hard time in my life but I am glad I was there for her. I remember when she was diagnosed she told me that she used to pray all the time asking God to keep her here until all her children were adults. My youngest sibling is 10 years younger than me and she turned 21 a month after my mom was diagnosed. My mom said she told God thank you for answering her prayer but he didn't have to take her so literally!

I wasn't at the hospital when my dad passed but I was for my mom. On the day she passed I was at the hospital alone with her. My DH was at home with DD (15 months old). And my siblings just couldn't bear to see her in the state she was in anymore. When you mentioned they were wetting your husband's lips with a wet sponge I cried. I remember doing that for my mom. The nurse at the hospital was a true angel. She gently explained the signs to look for and told me it wouldn't be long and that she was surprised my mom hadn't passed yet. She did say sometimes a person won't pass when someone is there and suggested I tell my mom that I was going to take a little walk. That I would still be in the hospital and close by but I wouldn't be in the room.

I left the room for a while - walking to the area of the hospital where my DD was born only 15 months earlier. I was thinking back how my mom was right there with me during many hours of labor and was so excited to meet "SweetPea". She was there when my DD took her first breath.

When I got back to the room mom was still breathing but her respiration had changed. I told her I was sorry I'd come back too soon but I was OK being there and wanted her to be at peace. Shortly after I saw my mom take her last breath.

Life can be so wonderful and so awful. Rodeo, I will continue to pray for your family. Life will be good again one day. It will.

Debbie

 

[chrisney]

I am so very sorry for what your family is going through. Just got done watching it with a coworker and her husband. I don't know if this will help, but I remember thinking that, as my mom drew her last breath, that somewhere out there a baby is drawing their first breath. I wished for that baby all the love that my mom had experienced in her lifetime. It helped me.

 

[maxaroni]

I am glad your kids will see their dad today. As someone upthread said, and you started your thread off, life changed so fast and the whole process has been exceeding fast, not time to absorb and process what is happening. Just needing to react to the days situation.

I know when my mom was ill, 9 years long, at some points, it was not day by day, but minute to minute so can somewhat relate. For my mom, she was critical from day 1 but what she passed away from was not the initial issue, but an effect of her treatment.

As for hospice, my mom was only in hospice for about 54 hours, so that part went very fast. Had she had a bit more time, I may have learned all the signs to look for in the actively dying. However, for some reason, I knew it was nearly time. I felt it. Mom came home and we lived 2 miles away (my dad has since moved), and came home to sleep,going back the next day. Again, we came home that evening. Early that next morning, dad called and said it appeared she was in the midst of a heart attack and was waiting for the hospice nurse. We went right over. Since mom was not in hospice long, we hadn’t gotten “the box” of morphine, ativan etc. The nurse was able to get a doctor to get scripts for this and she would instruct us on dosage. While we were waiting, I was holding my moms hand and kept telling her I loved her. She looked into my eyes and said “not as much as I love you”. Shortly after, she went into a drug induced sleep. I told my dad that we were staying at his house that night. She passed that night.

Another sign that it’s fairly imminent is that his jaw will slacken and mouth be open, his eyes won’t totally close but it will appear that he is staring. I know it’s tough stuff here and am sure you have been told by hospice.

My heart truly goes out to you and your family. You are losing your life partner and your kids their dad at a too young age.

(((HUGS)))