Having cancer

Everything else
1010

The roller coaster ride that is each day now is truly exhausting mentally and physically. This one ended well. My wife appears to be chatty when people are here to engage her. She’s wakes up, her memories rise to the surface and she can get loud. In a good way. Any filter she had, which was minimal, is off and she is funny and a little more foul mouthed. We had this thing where we would do various bird calls. No in anyway accurate like you see experts do, just noises that sound like birds. She started doing them this afternoon with her sister and me. Then she did them for some friends that came by. My youngest said, “Mommy wasn’t funny before and now she is. I like that.”

She has been eating only apple sauce and not much of that for almost a week. I asked her if she wanted some cut up fruit and she actually said yes. That hasn’t happened in a week. Then, I began to feed her and she said, “You’re probably going to get tired of doing that. Let me do this.”

I sat with a beer, we talked about back-to-school shopping as she struggled, but generally succeeded, to get her points across and she finished that small bowl of fruit I had cut up into small bites.

The details about the shit that went on throughout the day are completely immaterial after that and I bitched about those to other people. So you get the good stuff today… :)

EDIT: I think the takeway here is that I have been so busy coaxing her awake, attempting to feed her, getting her to the bathroom, making sure she takes the meds at four different times throughout the day, that I have no energy and sometimes no thought to just talking to her. I even told her to night, “You probably hear my voice and think, 'I’m going to pretend to sleep because he’s going to make me do stuff.” She said "Yeah, I hear you and say to myself “That mother fucker…” We both laughed. She’s still in there rattling around and fighting.

1011

That post made my day, @Tyjenks!

-Tom

1012

I think I’d like your wife and her sense of humor a lot if I was ever fortunate enough to meet her. That little story brought a big smile to my face.

1013

Things haven’t changed much. I am looking at getting a full time sitter for 5 days a week and have names. Giving up that much control over her care is difficult. However, my back is starting to whisper complaints regarding lifting and helping mover her to and from the bathroom 3 times a day.

Had the talk with the kids today. They’ve seen her condition and are aware, but needed to understand a rally from her condition is unlikely. I do not want her passing to shock them any more than it will when it happens. At this point, the mets in her brain could hit something and she could go. Following that, I went ahead a laid it out to those who did not know on Facebook. She had people reply who were friends from when she lived in Utah, camp counselors, teachers and tons of people she had not seen in 20 years and people we see regularly. I read some of them to her and showed her a couple pictures that people posted and she was happy about that. Here’s my FB post for those of you who are not friends because it probably best sums up where we are without re-hasing it, which I sort of already did. :)

Hi everyone. I talked with Alison and Ellen very honestly today about Rebecca’s condition and will share with you so that whatever God, tree, energy source, spaghetti monster, or Grand nothingness you pray to or yell at you can do so for them. For Bec’s Mom, sister and brother. For all our extended friends and family.

Bec hasn’t been able to get around without my help for about ten days. She sleeps much of the day and her appetite has waned. She is not in pain and we are keeping her comfortable.

Ellen and Alison are dealing with it differently but wholly appropriate to their personalities. They have seen how their mom has been and I simply told them we are doing what we can to make her comfortable, talk to her, hug her and love her. However, there are no more meds that we know that can change her condition. We don’t know what tomorrow holds, but we will keep fighting and supporting their Mom as she continues to fight. When she wakes and we engage her in conversation, she’s still funny and and herself if a bit more reserved and slightly disoriented. But get her going and she gets louder and we are all laughing with her.

That’s about it. As far as I’m concerned, today is no different than any of those in the last 27 months since she was re-diagnosed. We’re a family making it through life’s struggles with lots of love and support.

I have been pretty transparent and honest with the kids and most everyone else. This may seem too grim or too sensitive for Facebook, but I intend it to be as Bec has always said she wants things related to our lives together. A celebration of what we have all shared and continue to share.

Love to all.

1014

It’s heartbreaking and beautiful at the same time. Your strength continues to be an inspiration.

1015

I haven’t posted in here thus far, Tyjenks, but I’ve read everything you’ve posted. I also read some of it to my wife, and it generated some discussions between us about our own plans for ourselves, and what each would want the other to do in this sort of situation.

I want to thank you for creating that opportunity. It amazes me that you can sit and write as you have been, after dealing with everything you are. I wish you, and your children, and of course your wife, the best of all possible outcomes, whatever those may be at this point.

1016

i just spent the last 20 minutes catching up on this thread. I skipped a lot, and my heart is in my throat right now. I see where you’re headed @Tyjenks and I wish you much love and support.

1017

Last night was about the last time she could use any strength to get out of bed, drape her arms around my shoulders as she shuffled with a lot of support from me to the restroom. I’m not a particularly strong man, but I am tall and with leverage was able to lift her up when necessary. However, a couple times I tried to just muscle her along and my back was beginning to whisper its displeasure.

This morning, I was going to leave to try and work a bit while her mom and my dad and step mother stayed with her. However, I had to make sure she either went to the bathroom or we tried something else. She had been resistant to using the bedside commode, but I had convinced her all I would need to do was get her up, pivot her around and sit her down. Even that would be exhausting for her as the act of sitting up, even with my assistance brought a mixture of minor pain and draining of energy. Without the urgency in needing to go, there was no getting her up. Mentally it was wasted effort for which there was no need to rouse herself out of her fog. She just wanted to sleep.

So today was the day I had to put an adult diaper on my wife. i don’t see any use in avoiding talking about it. Pretending like it wasn’t coming to this and leaving it out of an end of life discussion is exactly why dread can build. Now, some may want to avoid the subject altogether until absolutely necessary. For me, that makes the challenge of many of these things that must be done that much more difficult. I certainly have not dwelled on the need to address this with her or the activity itself, but I was mentally prepared . And I needed to be because she was not. Even if we had talked about it, she probably would not have recalled it.

None of that made it less hard. The indignity probably had less of an affect on her due to the haze she is in, especially in the morning. I guess for me it was simply the next step of many terrible steps, but one I could not circumvent, so there was no use hand-wringing over it, but there was a strong desire to do so.

Monday a full time sitter starts. She is full service and a former nurse who loves this work. She worked for our minister caring for her Mom. I discussed it with Rebecca when she was more lucid and she actually knows the woman as she had seen her at church. That makes me happy, but the woman already sounded lovely and perfectly qualified and capable when I spoke with her. She can cook, clean, give her meds, give her baths…anything she needs. This, more than any of the steps we have taken i thought would be the hardest, but it seems surprisingly easy and I think it will also provide me the most relief. I basically plan (or don’t plan) each day around Bec’s meds, her trips to the bathroom and her eating. Someone who specializes in that will relieve a lot of the worry.

I don’t like ceding her care to others, but I think it’s friends and family members I don’t like handing her to. People who don’t know the tricks to get her to move or take meds or eat a few bites. People who don’t know how to sit and wait as she gathers her strength and thoughts. When you then ask her to do something and she says “Just give me a minute!” as if you only just asked her and are badgering her when it has been 15 minutes.

Patience in nearly unlimited amounts is what has been required throughout this journey and its necessity does not wane as her appetite and ability to do simple tasks does. It increases and even the brief bits of peace you may have to yourself continue to erode when you think they have already evaporated entirely.

The kids start school next week. They are staying with friends and going to the lake for a couple days. I am so glad they can get this break. They are not struggling too much at the moment. Some mixture of them being great kids and my painstakingly careful, overthinking of how to handle each negative along the way may be paying off. Honesty has been the key for my two, but I am not yet sure that would apply to every child. Different children can handle different things and handle those at different rates of exposure where the details are concerned. I can’t imagine my now 16 year old handling things this well when she was my youngest’s current age of 11. However, my 11 year old, with the help of a talk/play therapist and my frank discussions is coping so much better than I could have imagined.

TL;DR: Things continue to suck and the sucking is slowly increasing, but we continue to make it through each day and share some laughs. That’s about the best I could have hoped for at this stage. Support continues to be amazing. I would add, to anyone going through similar circumstances, to get over accepting help as quickly as possible when it is available. That was hard for my wife and I and continued to be difficult for the wife as her ability to do anything became less and less. The support has kept me going, but I am supremely tired of having to accept it.

1018

Thank you for the update. I wish I had something clever or uplifting to say to you that wouldn’t sound trite.

I will say that kids’ ability to handle bad situations gracefully or logically is a learned skill. Your kids may indeed be naturally great, but don’t discount the greatness that has been instilled into them by observing exemplars close at hand.

1019

I know about this. It is the subject of many jokes and and ridicule, until it’s your turn to need it. Not me, not yet anyway, but my father.

He resisted at first but as he kept sliding down that path of being unable to do the ADLs, he essentially quit worrying about it. I tried to make it easier by referring to them as underwear. I don’t know if that helped; I suspect it was more the creeping lack of situational awareness that made a difference.

My mother was a different story. I think she may have used some at the end but her cancer was swift and there wasn’t much time to dwell on it.

Use them as a clinical necessity and without embarrassment. Anyone that pokes fun at you for it can go straight to hell, unless they’re the ones cleaning defecate off the floors and digging it out of the carpet for you.

Speaking of which, I think it’s awesome that you were able to get a great full-time sitter. My choice, assisted living, was less optimal but it was all new to me at the time and I didn’t really know what other options I had.

One of the issues my father had with the diapers was that if one was soiled it needed changing in a timely fashion or accumulated moisture could lead to rashes. This did happen because in AL people aren’t dedicated to specific residents, even though I paid extra for more attention. A full-time sitter would significantly reduce this risk.

Also check with your hospice. I was buying a case of the diapers every month until the hospice staff told me that they were included in their service. It’s hardly the most expensive of the healthcare costs but every little bit helps.

1020

Yeah, hospice will bring them. And to drill down further, my wife’s bowels have not moved in maybe 10 Days+. She eats so little. Milk of Magnesia and an enema have not worked. So I don’t really know that part will be a concern. Although there will certainly be other concerns to come.

Thanks again to everyone for allowing me to have this space and to you who continue to share stories and/or sympathy. I have spoken to friends and family about having a thread on a forum I can go to and how helpful it has been.

1021

For readers who aren’t aware, the handling and scheduling of meds is much more than taking a couple of pills, or a puff off of an inhaler. Some meds have to be taken before others, can’t be taken with others, have to be taken at precise times. If there are any opioid painkillers, the storage and handling restrictions can be very complicated. And there always are so many of them.

During my son’s treatment, he developed a massive fungal infection in his spleen and liver that necessitated daily infusions of a certain medicine for a few months. It took my wife and I two hours every evening to premedicate him against the side effects, then mix and set up the IV to infuse overnight.

Thank you for the updates @Tyjenks.

1022

I’m not really sure what to say, so I’m just going to say hang in @Tyjenks. I’m glad this thread is working for you.

1023

I’m also grateful for these updates, Tyler. And you might not intend this, but one day these will be a real gift to your children.

-Tom

1024

I am not prepared right now to go into details from my parents both passing a year ago in the summer, but while they didn’t have cancer, their lung disease caused their last days/weeks/months to be similar to what you are going through in how our bodies can start to shut down when faced with distress.

I was fortunate to have an aunt that has a lifetime of working in a nursing home and stayed with both of my parents through their most difficult times, some times for days at a time, and was there for both of their passing and to offer comfort and candid answers to both their questions and ours. I have the utmost respect for what she did for them, and for me personally, when I couldn’t travel to be there for much of their care. What you are going through is that multiplied by a large amount and I can’t imagine what that is like.

Like others here, I have read all of your posts and wish I could do more to assist or ease your burden. It also makes me realize how much documenting and sharing your experiences can help others so it makes me consider writing about my memories of my parents’ last days and weeks/months while they are still fresh in my mind.

1025

Thanks everyone and thanks to those of you who continue to share information and stories that must still be difficult to re-live.

. I can tell you one thing, I don’t mind socializing with loved ones. I am very happy for everyone’s support although I am tiring of needing it. I am immeasurably tired of having people at my house when I am there. I am tired of having to help manage things from afar when I attempt to work. I am tired of playing referee between the hospice nurse and her recommendations vs. the cadre of nurses and doctors with which my mother-in-law consults to second guess hospice. Never directly, mind you, but she lets it be known through hints and eye rolls and questions. Then I still have to clarify with hospice why we are doing what we are doing and it is never enough. Every move is questioned and suspect.

One of the most recent is diaper vs. catheterization. I know the diapers and my wife’s dead weight make for a difficult combination especially when I am not there to assist. However, the nurse, through years of experience, says they recommend against a catheter as, in her disoriented state, she is liable to rip it out if it feels uncomfortable. She already takes off her oxygen often. I will try to put the oxygen back on her and I guess due to the tone of my voice she thinks I am trying to give her medicine so she puts the tubing in her mouth. My mother-in-law says, well, if she rips it out, we’ll be in the same spot we are now.

Another is a larger tablet medication. My wife is having trouble swallowing it. last night, she thought I was giving her a piece of plastic and I thought she had swallowed it and later spit it out. The nurse already looked into liquid form and is getting that. While the pill can be broken in two, it is not supposed to be crushed, per the pharmacist as it releases into her body to quickly. My mother-in-law thought you could crush it since it had the ability to be split. She did not add that she crushed it and administered it over 4 hours. So I was left with a back and forth with my mother-in-law and the nurse who consulted with the pharmacy trying to argue a case for something that didn’t really matter.

My mother-in-law is there when the nurse comes, but rarely addresses these things with her. And when she does, she gets an explanation with which she is not satisfied. I have emphasized my wife’s and my trust in the hospice people and my wife told her mom that as well when more lucid. None of that matters. The nurse is only a nurse and not one my mother-in-law knows and worse yet, she is not a doctor. And my mother-in-law knows doctors and “it doesn’t hurt to let hospice know that”. Whatever the fuck that means. Like it is a battle for my wife’s care and hospice is attempting to get off cheap and even though all involved with the hospice company have years of experience in this field.

I think I have brought some of this up before. Having a sitter 5 days a week should alleviate much of this and, hopefully, be less I have to help manage and mediate.

I know we all want what is best, but being direct and clear in times like this is essential. You cannot mumble complaints under your breath or let questions and doubts fester. I think for my mother-in-law, her personality is such that if the hospice nurse drug my wife out of a burning building, her method of dragging would be critiqued and why did she let her get so many scratches?

The hospice nurse is literally getting done with her work, going to her office and bringing supplies to our house on her way home so that we’ll have diapers with the tabs rather than pull ups. Diapers the nurse offered initially, but my mother-in-law turned down until today when her friend, formerly a nurse, came over to help and recommended hospice bring them.

These are all things we should not have to deal with, but with which I am continuously dealing.

And with that, here is a song that has meant a lot to me since it debuted before my wife’s re-diagnosis and means everything now as the struggle continues along with my struggles with the little bit of faith I have left. I love this band and this song is especially haunting, tragic and beautiful. It is about the lead singer’s mom’s losing battle with cancer. It is a lyric video so it is easy to get the gist.


God Went North by Nothing More

1026

Tonight she is barely responding and that has been the case for most of a couple of days. We have had to switch to liquid medicine and she will most likely have a pain patch on Monday. The kids are out for the weekend and I am torn between having them here and having them out of the death watch. I think being gone is the right choice with the diaper changing and her cries of pain when we have to change her or move her.

Tonight I do want to say I have been very fortunate to have so many people support us and I hope none of you have to go through this, but if you should, I hope you have similar people around to help and sustain you. My step mother has actually been wonderful. She has come over when my dad really is clueless as to what to do. The hospice nurse who is off this weekend, but said call or text her directly no matter the time and she will come over to help. I have already talked with her twice today. She loves my wife already and I can tell is struggling with us. My neighbor whose bunnies got fed by my daughters while they were out of town has been consistently available in offers to drive kids or go to the store or simply sit with my wife. My church family who has helped with paying for cleaning services and have come over and done yard work. In addition, they pitched in for a sofa bed so that I did not have to sleep on the sofa any more after 4 months of doing so. My mother-in-law who is constantly worried, but has put on a brave face and supported me even though there have been questions about her daughter’s care. The many friends and family who have reached out and given words of encouragement including you lovely people here.

The list is long and the people are numerous and it still confounds me that so many people want to help, but then I think of what they see in my wife. Friendly, caring and always with a smile. The number of people that have brought food or treats or flowers or IPAs are myriad. The people who have helped with my kids in keeping them over night or being a taxie to school or practices have been amazing.

I will pay all this forward one day and while I am happy we have such a support base I still get cranky with the number of people in my house constantly. My wife is the social one and when I am at home I like to be left alone. But I know I need the help. I also completely realize many are not nearly as fortunate. Some days my distress and irritation outpace that realization as happened today, but the day often ends with me being so very thankful.

I want to thank everyone and I have done so to individuals nd on Facebook, but I wanted to bring some of my thankfulness and positivity to this thread in which I often come to vent and release my sadness and anger.

So thanks to everyone including you all. I hope to prove myself deserving of everyone’s generosity once this chapter ends in our life and the next begins.

1027

Love you, man.

1028

Thank you. Love you all back.

Did I say already a friend of my wife’s from high school got up at 5am in North Carolina this week, drove to Alabama, spent a few hours with her and with tears in her eyes drove back the same day for her kid’s field hockey try out? I don;t think they’d done anything but connect on Facebook in 20 years.

Another friend of hers just friended me on Facebook and posted a picture of my wife’s childhood home as she had just visited the little town, Price, Utah, last weekend and felt compelled to take a picture of my wife’s family’s old house.

I am encouraging everyone she knows to come by now so she can hear their voices. Whether she responds or whether I can tell if she hears the, so she can be seen and people can say hi again.

I don’t feel deserving of all of this help and support, but my wife deserves every ounce.

1029

All I can offer.

http://thenicestplaceontheinter.net

Thank you for your continued sharing.