Your daughter probably notices the stress and strain this is having on you and gave you a little break. Yay families![quote=“Tyjenks, post:969, topic:75670”]
I hope everyone here who is struggling with this or any disease or is a caregiver or has a loved one that is, terminal or otherwise, knows they can always send me a PM if they want to talk. Opening up with friends, family, strangers, anonymous people or at all can be difficult. Laying your soul bare helps me, but it may not you. I don’t have a lot of stellar advice or words to say it will all be OK, but I can listen and say “Man that sucks” along with you if you want to get something out that you do not wish to in the thread. You will all make it through as I will. You will be a different person most likely, but it all part of the deal and a part we must endure.
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I wholeheartedly endorse this. When I was going through my son’s cancer and treatments, I didn’t open up or talk to anyone about what I was going through. I’m a firefighter and was a paratrooper, I’m far too tough and badass for mere emotions. Now I’m paying a price for keeping all that bottled up, physically and mentally.
@Tyjenks, I’m going to Origins today and tomorrow. I’ll throw some dice in memory of you and your family and hopefully send some natural 20’s your way.
Woohoo!!! I have family in Columbus and constantly threaten to go to Origins. Maybe next year. Enjoy!
I am currently still on track to go to Dice Tower Con in a few weeks. I need to make sure people are available for my wife and I am still very hesitant, but I need the breather for a few days.
Did you know with hospice care you have to be re-certified after three months? They evaluate your condition and determine if it has changed. Declines in health of any sort, increases in the dosage of pain meds and any other negative that has occurred helps to get you re-certified. I believe it is a step in the required process to justify the need for hospice and to qualify under Medicaid for payment. Our nurse told the story of a woman who had not really changed in 6 months and could not be re-certified. The way she told it made it seem she did not really need hospice in the first place.
Hers was an example to help us understand that she expects no problem in re-certification of my wife as the increased need for pain meds is a “big one” in the process. Again, the nurse made it a point to reassure us that she thinks it would be no problem. However, the emphasis placed on that assurance was worrisome. Is that a threat if Rebecca has a few good months of not falling or needs a steady dose of pain meds rather than suffering from increased pain requiring larger doses. What if she actually starts getting out more? At one point the nurse said, “I am good at finding things”. That seems to be an obvious signal that “finding things” to allow re-certification, while most likely rare, has become necessary in some cases.
It immediately struck me that this puts you in a position of needing to support the decline of your loved one with evidence from treatment or the evaluation of her health, . If you cannot, you get removed and either have to pay more or…actually, I do not know what we would do in that case.So you want them to worsen to stay on hospice.
I was still processing all this, so I did not ask for any additional clarification right then. Also, it is not something I want my wife to have to worry about so I did not want to make it a big deal. Seems she chose to ignore it or it did not strike her in the same way it did me. I intend to call the nurse and ask her some questions to clarify things. Lately, however, my depression has gotten the better of me and I only intend to do whatever is pressing within the next hour or so to the exclusion of anything that can be delayed. This is a good candidate for delaying.
Hi Tyler. Is it possible to switch to palliative care? Hospice really is ‘end of life’ care and it may have kicked in too early in your wife’s case. So few people have ‘long term care’ insurance in this country and it really bites them in the ass when these types of situations arise. Hope things work out for you and your family.
Good question. Yes we had looked into Palliative care, but due to the large number of tumors being in multiple locations in her liver, spine, sternum and lungs with an especially large mass in the liver that had progressed the most, the doc estimated to her mother and I about 6-9 months. This was three months ago. It certainly does not encourage “fighting” in any way to stay alive. People kept saying “get hospice, it doesn’t mean giving up, you’ll be glad you did”. So far, it does appear to mean giving up and I have found little relief other than we don’t have to drag her to the hospital to get checked out and for useless tests.
Also, she loves the company and her nurse. At this point, it would be miserable to change all of that to only then revert back in some undetermined number of months.
Our healthcare system is ridiculous and maybe there is little better way to do it or maybe there is, but none of that matters in the near term. Everything about this is sort of diabolically insane and each day that insanity is having a possibly direct effect on my own sanity.
I would guess her intent was to ease any worries you might have about re-certs rather than instill worry. She was saying, even if your wife stabilizes, she’ll get you the re-cert. And you shouldn’t worry about it unless she tells you to worry. She’s got your back.
In the eulogy I did for my son, I said the healthcare system in this country is, ironically, a very inhumane system, but that scattered throughout the system are some incredibly humane and caring people. Your wife’s nurse is one of them. If she knows how to game the system, don’t spend one second worrying about it, because the system blows and you deserve whatever breaks you can get.
Wow. I don’t come in here much. Due to people who have died in my past. But I have to say there are a lot of people here who are very strong. Very centered. Really.
I hope it’s okay to say, in general, you are all heroes. Each and every one of you.
I do realize that and agree regarding the recert. However, the problem was I was not aware of that evaluation process untill she began to describe it. So I did not see the full scope of what all being covered by Medicare entailed and the reality of how it functioned in the need to support measurable decline. In retrospect, it is obvious as, no, they cannot afford to have multiple people getting free care for extended periods. However, I also assumed initially this would somehow be covered by insurance and when they said Rebecca would be covered asw if she were on Medicaid, I just accepted that at face value and moved on. My mind, which does analyze and think through everything, simply stopped its analytics at that point. :)
Yes, I have no idea how hospice nurses do what they do. I cannot imagine the mindset one would need to do that. My stepfather was a radiation therapist and treated many who ultimately passed away. He was a complete dick at home so I saw how he dealt with it. The godfather to my oldest was a practicing pediatric gynecologist. He would do examinations to help young girls who had problems in that area and also testify in abuse cases. I have no earthly idea how he did that, but I know with him, certain things became matter of fact in weird ways. Like one day he showed us a vaginal ultrasound where a girl had lodged a gauze pad or cotton ball. Like, “Hey, look at this interesting case”. No, there was no medical or personal information shared about the case. Just this weird picture he wanted to share.
Point being, I don’t know how many people in the medical profession do their jobs and I am thankful for them. I worked at a hospital for 7 years when I was younger and then in a medical service company, so I am familiar. Also, all too intimately familiar with doctors and nurses due to my wife’s second trip through cancer we are enduring. Her Oncologist is a brilliant, compassionate woman who is personally handling a billing issue that has gone to collections.
That’s a lot of scattered info. I am seriously in the midst of a bout of depression. Not quite debilitating. I can get what I need to done, but my work has suffered and I am battling with patience for everyone around me. My sister is in from out of town and has desperately wanted to be here to help. There is little she can do. She will want to spend time with me. I do not really want to be bothered with anyone. My family has never been one that fostered a sense of relief or comfort. They have always had problems with which I have had to deal or at the very least be involved in the middle of. She is very understanding and I just need to explain to her the full scope of things with which I am dealing…which I am also tired of doing. Just the daily morning routine is exhausting based on each morning’s symptoms, making sure she eats something when she feels like eating nothing and any pains or discomfort are measured for possible use of supplementary additions to her normal 5 pills. Now many days by 11 she can get up and around, but the mornings are always stressful. Weekends, it sort of infects my day for lack of a better descriptor. On weekdays I sort of hang around at the house to make sure she has what she needs before I leave and then worry until I get word she is up and about. Mentally it is accumulating and may be becoming too much. But I will persist.
Thanks as always everyone. I know many of you read and may not comment, but I want you to know I appreciate your listening/tolerance. :)
Thank you. I completely understand not wanting to dip into this thread at all. It is hard for me now, but @tylertoo and his story has helped me keep going as has many of the others. Shit that seems impossible is not. You just keep going. You fail and screw up, but you get up and do it again until things are fixed or it is over. That sounds bleak and that same route is not necessary for everyone. Some people’s journies are similar. Some easier. Some more difficult. The ability to move forward when some days the movement seems imperceptible is what ties us all together in life regardless of the severity of our challenges. Even after these few weeks where things have been terrible, the movement has been forward as that is three more weeks survived. Three more weeks we can all say, “Look, this sucked but we did it”. Three more weeks of pain, but three weeks with some smiles and laughs sprinkled in. It gets very hard to focus on those brief glimpses of life in the midst of all of the suffering, but all my rambling, while often bleak, stands as a testament to the fact that we all made it this far and we will make it through whatever comes next.
I went to a Red Hot Chili Peppers concert last night, and about halfway through Anthony Kiedis stopped for a minute to talk a bit about his father, who is nearing the end of his life. (No details were given but it seems he’s suffering from dementia.) The gist of it was that the impending loss was real, but as much as possible he tried to focus on celebrating the time that he’s had with his dad. Something similar will happen to us all eventually, and he encouraged the crowd to show support not just for him but everyone dealing with loss (impending or otherwise).
The folks whose stories we’ve seen in this thread came to mind for me in that moment. Several have lost parents, friends, or other loved ones. Some are going through the painful process right now. All of you are in our thoughts on a regular basis, not just when we happen to see more posts in this thread. We may not get 12,000 people roaring to show support like Kiedis did last night, but for whatever it’s worth, our best wishes are always with you.
It occurs to me that this thread began with @tomchick’s story. I was just listening to one of his podcasts recently and thought to myself how good he sounds. His old voice seems back. And so Tom, how are things?
Very kind of you to ask, thanks. My two-year scans were clean, and I’m waiting on the results of some biopsies I just had done. But I feel good, I’ve gained all my weight back, I can eat pretty much whatever I want (although some things are harder than others). All the changes to my throat now feel like the new normal to me, but there’s some possible damage on my vocal cords that the doctor wants to keep an eye on. I go back in on Friday to see how that’s coming along. My original oncologist said he would be reluctant to use the word remission until I’ve safely hit the five-year mark, but at the half-way point, I kinda want to use it anyway.
As for this thread, it means a lot to me that @Tyjenks is sharing what he’s sharing. This sounds kind of corny, but this thread was a source of strength for me, and I hope it can be that, even in the smallest way, for him. We’re here with you, Tyler.
Yes, very glad to hear Tom! It is great to hear good news. I think I said previously that some may think I would feel some sort of resentment at people getting good news when my situation is less than ideal, but it ALWAYS makes me happy.
On a sort of related note and in the category of “Things not to say”, here is another in the list of unhelpful things my stepmother and Dad have expressed following on the heels of my 70 year old stepmother surviving ovarian cancer. My Dad tells me how my stepmother feels bad because she is doing OK and my wife is not. Ya know, because she is older, I guess. I understand the sentiment and others may appreciate it more than I do. However, in my pragmatic mind, that does me no good and is irritating. It doesn’t help my wife or my kids. She has some sort of survivor’s guilt that my Dad felt the need to share because, while a retired minister, has very little clue about how to interact with his children so he grasps at things to be helpful. My patience for people trying to be helpful in unhelpful ways is unfortunately wearing thin.
Thanks x 100 @tomchick. Some days I want no part of this thread and other days it is amazingly and surprisingly helpful. I talk to people about with what we are dealing regularly. I am very open and at this point relatively blunt. With a few, I will have deeper conversations, but the nature of forum discussions and this thread specifically has been cathartic in ways I would not have thought possible. Being able to be honest and not having to apologize for that honesty (although I seem to have done that anyway) and being able to do it so thoroughly with words I can take back and correct through editing is wonderful.
Also, Tom and this forum are a constant in my life since 2002 or whatever. It was my first journey into online posting as I was hesitant to talk to internet weirdos (like me). I lurked for a bit, but quickly became a prolific and mostly annoying contributor here. “Contributor” in my case is very loosely defined. The point being that this forum was here during my wife’s first diagnosis and I don’t think I talked much about it and I would have not talked this time had Tom not gone through what he has and been so open about in this thread. I remember how affected I was when I first heard Tom’s news. It certainly seemed weird at first, but it makes sense because, while it didn’t start this way, I grew to know all of the posters here as people with many unique ideas and outlooks. Now we do, or at least I do, have the habit of assigning traits to people based on posting patterns and topics discussed, but at some point the biases that practice assigns to people were shed and real feelings developed for the people I have known here. Anyone stricken with a disease or experiencing some catastrophe or challenge even on the internets creates sympathetic feelings that I did not realize I had. Although I am considered by most of my friends a sympathy filled “bleeding heart liberal”
All that rambling to say, I can feel that many are with me and it is greatly appreciated. I hope the best for everyone who experiences any of life’s challenges and I love reading when people overcome them. Here’s to all of you that have overcome them or are still struggling. I’m with you as well.
If the were still a “like” button I would click it with silent approval. But since I am compelled to post my agreement in an arrogant manner I will echo Tyler’s sentiment. Posting about this stuff and hearing that other people actually cared was very important to me and my family.
There’s been several times I almost came here, but did not as the blow by blow was becoming exhausting. My wife’s decline has increased in the last few weeks. Increased morphine required, increased disorientation, increased tiredness and a decrease in appetite. Yesterday was not good.
Her nurse definitely thinks the decline has sped up. My wife and I and she and her mom have talked about funerals a bit. We’ve talked about the celebration she wants. She wants to donate her body to the Breast Cancer Research Foundation. However, this week she only just realized how close her death is. She understood terminal, but it was a bad thing to dread in the distance. I had to be honest with her about her limitations this week and they may have finally brought it home. I don’t feel too bad about that as it is probably time. It couldn’t really wait and she was wanting to increase chores she helped with which would have kept her from doing anything she enjoyed even if it was sitting up doing a puzzle.
So hospice comes this afternoon. I treated today normally as far as the kids go and going to work normally as she does not wake up until 11 or so. Her mom will come over to deliver lunch as she often does. I’ll come home early as I often do and explain to the kids that their mom isn’t feeling well, as they have plainly seen in helping out, and the nurse is coming out to check on her. i don’t know ho much they understand subconsciously and I don’t know if today will be the day I will flat out say “She’s not getting better”, but I think I’m prepared to do so.
last night the kids and I were up playing a new board game I got. I was playing with my oldest while my youngest was on the iPad and we were laughing and having fun. My daughter scored in the last second of this football board game (Techno Bowl) and we all went to bed at 11:30. I never let them stay up that late, but it was good.
I don’t know how long she has or what comes next, but that’s been every day for a months. I do appreciate this space and everyone’s thoughts, prayers vibes spoken and unspoken.
Thanks,
Tyler
EDited only to say the kids and I were up playing a game. My was in bed sleeping, but I checked on her off and on throughout the night and got her water or her meds when it was time.
