How fast it all changed.

[disneyeveryyear]

@rodeo65, I have been following your story and am heartbroken for you.

Two years ago my mother wasn't feeling well and went to her primary care physician. He felt a mass on her liver and sent her for an x-ray (I think). Five weeks later she was gone, the last two weeks of which were spent in the hospital. She was admitted due to a UTI with extremely low blood pressure. The biopsy showed her liver cancer to be primary, so I can understand the whirlwind of emotions that comes with such a quick diagnosis and speedy decline.

After her kidneys failed, and her nephrologist told her that due to her extremely low blood pressure, she was at risk of a MI or stroke with initial dialysis, she chose on Saturday not to do dialysis. By Sunday night she had slipped into a non-responsive state and we lost her on Tuesday. Sunday night she lapsed into pain and I threw a huge hissy fit at the nurse's station because she had an incompetent nurse who wasn't getting meds to her in a timely fashion. I told them the only thing we had asked for was a peaceful, pain-fee passing. Ultimately the charge nurse took over her care and got a morphine drip brought in and it took a few hours, but her pain was finally controlled. Of course, she then was totally unresponsive. Due to her unstable condition, she was never moved to hospice, but in a sense was in hospice care in the hospital.

I understand some of the pain, but can't compare the loss of a parent to the loss of a spouse.

I know your DH probably doesn't want the kids to remember him this way, but if they want to see him, then I think they should be allowed to be there as much as possible. I think the not-knowing can be worse than knowing.

Please know that I am praying for your husband, you and your children.

 

[DLmama]

I'm sorry

 

[leebee]

I am so, so sorry.

 

[lisaviolet]

Rodeo to everything that you are facing. I cried thinking of your father's reaction/feelings. Love sent to you Rodeo, your entire family and all of your loved ones. May you find some comfort in being surrounded by everyone's love and support. It is obvious that you have it there in abundance.

 

[OhhBother]

Reading this latest update with tears in my eyes while I sit here at work. Please know you are surrounded by love -- not only from family and friends but also from a virtual community that has wrapped our arms around you. Prayers for peace and comfort for you all.

 

[Minnesota!]

One suggestion, if your husband is not up to seeing people, ask those people to write letters to your husband, and then you can read them to him, or he can read them on his own if he has the strength.

It helps get emotions out, things you have always wanted to say, and it provides some closure.

I did it for a few people, and they really appreciated it. Final words, without having to look someone in the face.

 

[Music City Mama]

I haven't posted since the beginning, but have been following. I think about you and your family every day. To echo the others, I really admire your strength, and I'm just so sad that your family is going through this.

 

[chicagodisneyfan]

Every update makes me sad. I keep wishing for a positive update for you and your family. As time appears to be running short, talk to your DH and see if there is anything he wants to get done. Letters to the kids for their graduations or wedding days, anyone he wants to say goodbye to, if he wants to write a few words to be said at his funeral etc. I treasure the moments I had with my best friend as she lay dying. We laughed, we cried, we talked, we drank wine. Cherish the memories. And may you and your children find peace.

 

[rodeo65]

Thank you all so very much! You don't know how much it helps to ready your words of care and support.

DH was trying to text me, not very successfully early this morning and then ended up calling. He wanted to leave. Had tried to get up and get his clothes which set his bed alarm off. When the nurses went running he said it sounded like the police were after him. They said yes, the bed police. He wanted his clothes and said he'd just use the bathroom first. That tired him enough that he decided to go back to bed. They adjusted meds and got him comfortable and the anxiety / agitation under control. He was sleeping when I arrived. They took me in to let me know what they were seeing. I can see it too. His colour has changed - he's grey now. 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. He woke up and asked the nurse if he was dying earlier. I think he's really confused now.

We had just finished that conversation when DD texted that she thought she was going to be sick and could I pick her up from school. Which I did and am home for a minute after dropping her off. Spoke with dad who is making the calls, although he said several people have suggested a celebration of life rather than funeral. I need more info but kind of like the sound of that better. He'll let me know more detail later. I'm heading back now.

 

[jodybird511]

Haven't posted, but have been following from the start. I'm holding you and your family up. May your final days together be peaceful and filled with love.

 

[MamaBelle4]

I am so sorry. A world of love, thoughts and prayers are being sent your way.

 

[Tattylou]

Sending you love and strength and peace. I've been following since the beginning of this thread. It sounds like you have been doing everything you can for him and your kids. You are in my thoughts.

 

[focusondisney]

Rodeo, I am so sorry to read it the last 2 updates. The disease is moving so quickly. Your family continues to be in my thoughts & prayers. My heart aches for you & your children. My DH’s mother died when he was 11. I understand what it means to have to live your life without a parent from the time you are young. It is a hole in your life forever. I am so glad you have family to love & support you & your children through this tragedy.

I hope you can feel the warm embrace coming to you from the Dis. May your dear husband find relief & peace.

 

[HeatherC]

Still praying for all of you. I pray that God will give you the strength you need right now. And I know there really aren’t any words to convey how we are all thinking of you and your family. I am so so sorry this is happening to all of you.

 

[Snowflakey]

Dear Lord I am so very sorry. I can't tell you what this thread has meant. You've shown all of us the strength and grace you put forth every day. You've made me want to be the person you've been when I have to deal with something like this.

I can feel the power and love from every single person that is posting on this thread. We all feel the pain and want nothing then to help lessen it for you.

As I've always said, live in the moment.

A celebration of life sounds perfect. That is my request when I pass someday. No funeral - just smiles.

Always praying....

 

[Snowflakey]

Every update makes me sad. I keep wishing for a positive update for you and your family. As time appears to be running short, talk to your DH and see if there is anything he wants to get done. Letters to the kids for their graduations or wedding days, anyone he wants to say goodbye to, if he wants to write a few words to be said at his funeral etc. I treasure the moments I had with my best friend as she lay dying. We laughed, we cried, we talked, we drank wine. Cherish the memories. And may you and your children find peace.

Very good suggestions here about writing some letters to your kids. Just think of how much that would mean to them at certain times in the future - weddings, graduation, etc.

 

[The Mystery Machine]

More hugs!!!

 

[anniemae]

Oh Rodeo, I am so sorry. I can't believe how fast this is all happening.

 

[LouChris]

@rodeo65 . I've been reading this from the beginning and this brings tears to my eyes. My bf and I just went through this in October with his mother who was like my own. She was fine so we thought and 5 weeks later she was gone from lung cancer that had spread to her brain and liver. To this day i think of it and tear up instantly its still so raw. Let your kids be there, take pictures even though they are not perfect. I took one that my bf was not aware of, of him caring for his mom. It turned out to be one of the last ones we had of her alive. That picture means everything to him. We had a celebration of life. Her golfing buddies came in and sang this crazy song that they would sing on the golf course and told stories. People came up to me and told me how happy she was that I was in his life. I miss her every day. I have no doubt that she is now having the time of her life golfing. Hugs and cherish whatever time you can get with him!!!

 

[luvflorida]

Sending more hugs and prayers to you and your family. So sorry to read your last few updates. Stay strong (I can't imagine everything you're going through) and know that you have an entire "community" here keeping you in our thoughts and prayers.