My wife used Caring Bridge during all of her procedures and whatnot and had a good experience with it. I don’t know that it’s a lot more efficient than, say, Facebook at getting the information out to your friends, but since it’s a little more open it seems to be convenient for informing the folks that are a couple degrees removed from you. It also has the advantage of being specifically set up for sick/injury type of stuff, which may tend to quiet down some of the silly questions.
I have thought about that, but I am pretty thorough in my post and generally I get very little in the way of questions. Maybe people just do not want to ask, but I am always very open and include, “Feel free to ask anything. I am an open book no matter the question.”
I just realized I responded to you with an expanded vrsion of my last response in which I discussed how quickly I forget things.
People continue to try to empathize and I try to create an analogy as to what each day is like in what isn’t an endless, miserable journey, but feels like one regardless. I come up empty because each day is uncharted territory. A mixture of numbness, anger, sadness, depression, et.al. Sometimes alternating and sometimes all at once.
Groundhog Day, but not in any way funny is probably the closest. I can do the same or different things every day. The results are the same and there’s no sign that it is ending. One day I’ll wake up and it will have ended. I may have already said this too. Probably did with far more words.
Yes, I know. I’ve mentioned in this thread about my son’s death. He was sick (not cancer, a metabolic disease) from age two to age seven. Five long, horrible years. He need round the clock care for all of those five years. He couldn’t walk, talk, or eat (fed through a feeding tube) and was in frequent pain. It was, like your situation, a daily nightmare.
Then one Saturday in 2011 I woke up and it all ended. He was gone. We’d known it would happen at some point. I rode in the ambulance to the hospital (no sirens, no hurry) and later a friend came to get me to take me back home to my wife and daughter. On the way I remember being struck by a thought: “Everything is different now.” The reality of our lives had shifted, quite literally, overnight. The relentless burden of his care had been lifted. It was, in a way, as shattering as his death.
Yet there was relief, for Aaron and for us. I don’t feel guilty for having felt that relief. Tyler, when you do wake up and find that it has ended, that everything is different, I hope you don’t either.
Thank you. I hope I will, too. When I think I can’t make it, I try to remember that people have been through this and often times worse. I know you would say as I have said, you just do what you have to, but it is indescribably difficult every day. So many unknowns and each one of them eats away at your patience and constitution.
I take turns hoping for that shift to come and hoping it never comes. Also, Rebecca can currently still get around some days OK. She went out of the house 3 times in one week last week. That was unheard of. But then the pain returned in her stomach where the liver mass is. I don’t know what any of this means going forward as we no longer do diagnostic tests. It is a weird adjustment piling medicine on top of symptoms and attempting to ignore the fact that the cancer has to be growing in all the places where it currently resides.
You guys are hella strong. That’s all I’ve got.
You got that right. @tylertoo I lack words man. That is a rough thing to hear, and that you can use your experience to help another in their struggle, I have the deepest respect for that.
This thread regularly brings me to tears. I hope you guys find all the strength you need to bear with things. I’m not sure I could.
And this is what I hope to do as well by being open and honest about the actual feelings and not “Well, it’s hard but I love her and we will fight until the end”. Very little of the daily reality resembles that. To me, what you generally hear from people is a Trumpian version of life where things suck, but being tough and fighting hard and praying makes it manageable. It leaves out the nuance that affects every decision. It ignores the times you are ready for it to be over for a multitude of reasons. It also comes down to how our society avoids discussions of death and fight it every step of the way. It is all understandable as it is a scary unknown, but I think more honest and frank discussions would serve us all well.
A perfect example was this weekend. My 5th grader is about to have a little elementary graduation. She needs shoes. I hate shopping, but my wife can’t go. She loves shoe shopping. She wants me to text pictures of choices so she can be involved. SHe has lost so much control over everything as well as her independence, so I completely understand. My daughter didn’t want Mommy second guessing every choice. So I was sort of mediating via text the entire shoe shopping trip. My wife didn’t like the final choice. My daughter did. Then they were loose on her foot, so that was disappointing, but it was all they had…anyway, the point being every single thing you do is often affected by the disease. It reminds you of the loss you are already suffering due to the inability to do normal, mundane tasks. Mundane for me, but something my wife is sitting at home lamenting not being able to be a part of as her daughter is growing up. A reminder that she may not be around for many more of these things and she is missing maybe one of the few opportunities she has left. It literally makes everything depressing.
The good days you ignore that and move forward doing what you have to and pretend everything fine. I have found what happens then is that you normalize your wife/mom not being there. In some respects, that is actually a sad benefit as it eases you into her actually not being there permanently. On the other hand, you are actively trying to forget she is still with us and not involved.
A bit of positive news among all the crap. My 5th grader had her little elementary school graduation and my wife did make it with the assistance of a wheelchair and after some anxious morning preparation. My daughter was one of five selected to give a speech. She wrote it herself and was funny and dramatic and goofy. She received her A/B Honor Roll certificate as well as a Presidential Award for leadership given to a couple of kids selected by the principal. Considering the amount of school she missed from anxiety related stomach aches and other illnesses, the fact that she continued to make nearly all A’s and set a good example for her classmates and is well liked means a lot. I know grades and awards are not everything, but it proves to me that she is resilient and her ability to cope despite a very difficult couple of years allays some of my fears about what is to come and how she will survive and continue to do the things she needs to as a kid after this part is over.
Nice to hear a good story. I liked the thing with the shoes too – a nice anecdote.
Kids have a lot more strength than people give them credit for, especially with you there to support them.
You go girls! (and Tyjenks, too)
Awesome.
I would like to round out that day to show how unexpected things come each day and what an unsettling roller coaster ride this is.
At 6pm I was napping on the sofa following all the graduation excitement. Because, I can fall asleep any time anywhere these days. My oldest was studying for finals and the 5th grade graduate was watching one of her 1,000 YouTube channels to which she is subscribed. I was awakened by someone who cried out. I assumed it was my youngest who is always banging into something. I see my wife crumpled awkwardly at the end of the hall. Her mouth and nose is bleeding and she is disoriented. She appears to have briefly passed out and fell hitting her face on something. Bookcase, picture frame, who knows. My mother-ion-law has me convinced these are seizures as it has happened 4 or 5 times before. Although, I have never heard her describe or seen any symptoms that would lead me to believe that. I begin to think leaving her without someone at home is beginning to be less and less desirable. She gets to the bed and seems to be fine soon after. No lasting effects except, embarrassment, fear, a swollen lip and questions as she thought she was “getting better”.
I call hospice, they come over the net day. We think it is most likely a combination of low blood sugar, just before dinner, and getting up from a seated position to walk down the hall. She began to get dizzy and assumed she could make it to the bedroom. My mother-in-law in her glass half full manner says “I hope they are right. A friend who died of cancer 25 years ago had this happen and it was seizures.” Now that we have a nurse practitioner with which to consult rather than an oncologist (although Hospice does have doctors should one be needed, of course), I believe she distrusts every assessment that does not conform to her expectations.
She does indeed appear to be fine and shows no after effects other than being sore from hitting who knows what with her whole body on the way down to the floor.
I woke this morning to a continually constipated cat who had left something on the sofa bed on which I sleep and cat vomit in the hallway. A big fucking Christian Montana representative who punched a reporter and was cheered and elected for it. Trump’s lecturing allies and pushing world leaders while praising murderous authoritarians. And Alabama just passed a law protecting our confederate monuments from being removed.
I am filled with so much anger and hate which is indeed preferable to depression and sadness, but more exhausting.
My wife is considering which lockets to get the kids so she can put a picture of the respective kid and her in. Yesterday she said “I don’t think I am going to die this year or even next, but I want them to have something. I am coming to grips with some of this”. At the same time, she understandably wept after passing out thinking she was getting better when there is logically no hope of that.
The kids handled all of this pretty much in stride. It certainly freaked them out at first however they rushed to help and my youngest immediately thought to get an ice pack. My oldest hovered around waiting for instructions. I talked to them the next morning. They were good. The crying of their mom no longer affects them. What would seem a catastrophe in the normal course of family events, has become almost par for the course. They were certainly scared, but it is just what we live with. Mommy passing out and smashing her face and being bruised. Now lets go finish exams and do an art project.
This is why when I try to tell people what life is like, there is absolutely no analogy or comparison to what can happen in a single day, much less the ongoing grind of it all. The unknown, the tension and the dread that is not always at the forefront, but is never the less always there, hanging in the background as we wait for the next new symptom or incident.
Others who have been through this probably do as I have done today and reflect on people going on vacation and how you have most likely pissed through all your vacation days and more. And what would you do anyway? Stay home where you are simply reminded of what life is now? Make all of the additional arrangements and plans to go on vacation knowing it is a crapshoot as to whether she will feel like doing anything or can get out of bed. Also, you are not near your caregivers. What do I do to recharge? And, she isn’t really even ‘that bad’ yet. If she saves up energy, she can still bather herself. She can make her food if she is alone. She needs to be more cognizant of her ability to move around and to sit when necessary. We have a laundry list of challenges yet to face and her gradual decline continues.
Enough rambling. I think I will have a morning Monster energy drink rather than trying to have coffee and wait until after lunch.I hope to play board games at a friends house this weekend, but I cannot really commit until the morning of as I never know what pain or energy level the day will bring for my wife as she wakes up. This morning, she is good and I think my chances are above average that I will get away. However, there is no relief or excitement in that. Only a constant, buzzing hesitancy that taints every daily activity.
You’re a remarkable person, @Tyjenks. Your family is lucky to have you. As are we. Thanks so much for sharing these experiences, thoughts, and feelings with us.
-Tom
I don’t really have words for you but hang in there and we’re here for you for whatever that’s worth.
I’ve learned a lot reading your posts. Important life stuff. It sounds weird maybe, but thank you for sharing.
Just wanted to add another note of support. I lost both my parents recently, one to cancer and the other to old age and dementia. They were different, one dying with her mind intact but body failing and the other with a functioning body but impaired mind. Both were forms of torture for them and for my family that tried to support them at the end.
I know the days of cleaning up vomit, diarrhea, and urine off floors. Of seeing my mother essentially being starved to death by the cancer that wouldn’t let her keep any food down. Of seeing my father, once a great electrical engineer that could fix anything, reduced to a man that at the end could not remember my name. But it was not as challenging as what you’ve described. Both of them were elderly and there were no young children, although there were grandchildren.
I also know the guilt of using assisted living. I did not want to but logistics were very challenging, with two children in school and both my wife and I working, and neither of my parents able to be left alone during the day.
For me, hospice was a great help. I was not terribly familiar with it, but both parents ended up using the service and both received some support and I’m eternally thankful for it. It was also of great relief to know that hospice was covered by Medicare, how much longer that will be true I don’t know but it is a an unsung benefit and I hope it will provide help to many others.
Regarding the natural guilt about being relieved (physically, mentally, and financially) when it’s over, what helped me was to know that it was also a relief to my parents who were suffering. It is not right for people to live in such pain, physical or otherwise, and I was happy for them to be free of it, to finally have found peace.
Bless you sir. Your strength is an inspiration.
A belated thanks, and to the extent my experience might help Tyler or others I offer this:
It’s important to remember that as bizarre as that juxtaposition seems to an adult, it is vital to the children – they are grounded in the stability and security of that normalcy. I’m sure you already know that, Tyler, but it bears repeating.
Our daughter was 10 when our son died (at 7); she was in the next room as I tried without success to resuscitate him; she witnessed the paramedics rushing in and then, a short time late, carrying his body out. It was a brilliantly sunny Saturday morning.
The next day I arranged for her to have a playdate with a friend. We knew she needed time out of the house, and with a friend. On the way, we stopped at a toy store and I told her to pick whatever she wants. That night she told us she wanted to go school on Monday. We consulted with the school psychologist, who thought it was a great idea, and the teacher (4th grade) was notified. Our daughter went to school every day that week, and took part in a school concert one evening that week as my wife and I sat in the audience.
I would imagine there were parents who thought it odd or even disrespectful that we allowed this. We were convinced that sitting home all week while her parents mourned and planned a funeral was the last thing a 10-year old needed. Now, from the distance of six years time, I am convinced allowing her that normalcy gave her strength to cope.
The only day of school she missed came the following week, the day of the funeral, and her entire class and other friends – and teachers and administrators – also took off to be with her there.
I know your writing is helpful to others and perhaps cathartic to you, but I must add that it is amazing prose, as the paragraph above typifies.
Thanks for sharing your story Bernie.
I don’t have any words for any of this. But thank you all for sharing. I am deeply affected. That sounds trite and terrible, but that’s all I have.
Thank you.