Thanks everyone. I spoke with the wife and children about hospice last night. I told my wife making that choice does not change our circumstance or her current health. It is just a choice and I know it means giving up yet another bit of control that has slipped form her in so many ways. I said her Mom and I can continue to help and trade off, but at some point hospice knows better what you need and how to provide it in addition to the help it will provide the family. I know it is not an easy choice. It may be one of the last one’s she gets to make at least one that means so much. I told the kids almost the same thing. The hospice people are no different than the people who have helped with the yard or washed some clothes or brought food. It is scary and different, but I don’t think it means this sterile force that enters the house that will be a negative.
I also am beginning to be honest about how much I am wearing down. In the last few days I have been in turns lightheaded, nauseated and headachey. I thought maybe it was Saturday night beers, but the fluids and tums and anti-nausea medicine I have taken for 3+ days have not seemed to help. It may be my blood pressure. The doc has increased that dosage. I am really not sure. I just checked and its 130/90. Not terrible at all. And of course, work that has been amazingly patient and supportive, is as busy as it ever is and I am needing to help with others when I am so far behind with my own work.
However, a neighbor just texted and we have talked about Tig Nitaro coming to Birmingham. We talked about how I am not sure my wife will make it until then, but I was going to buy tickets anyway for us both. I had forgotten they went on sale this morning and she just texted asking if she could please buy a couple for us to go with her and her husband. I said sure. I quit resisting offers of kindness months ago as I know I should have even before that. I am very fortunate. I try to acknowledge that every day. However, the need to accept that help and the inability to see a time when you can give back and the desire to be self sufficient again wears on me. It is a reminder of how much I need and how much I cannot do. No one expects anything in return. Everyone tells me its OK and they are genuinely happy to do it. However, being able to do and provide for yourself for 40+ years and then every single day knowing how much help you need is still challenging. It is a reminder of how abnormal life is and how far from what you had hoped for as your kids got older and you could do more.
I feel so many of the same feelings others have here and you all have expressed these feelings so well.
When my mom was going through her last months, hospice was a wonderful help. Even though she was still at home, they would come by a few days a week at first and offer much support to my dad and my mom. I totally understand it can be a tough decision, but we had a very good experience with them here in Michigan and it helped in more ways than me or my parents could have imagined at first.
We will surely be thinking of you as you go through this and be here as best we can.
I don’t know what else to say that hasn’t been said, Tyjenks, and I usually refrain from talking in situations like this because I rarely feel like I know what to say, and when I do, I’m always unsure about how it will make anything different or better.
But I wanted to say that I hope there are better times waiting for you (and all those you love) just around the corner, and that you may rise over the weariness and sadness and grief soon enough to again enjoy the many good things that this suffering-filled world has, against all odds.
Hospice folks are wonderful people and I strongly recommend letting them in. However, hospice generally means that life is measured in weeks (if not days), so some reluctance on your wife’s part is understandable. Hopefully she lets them in.
Yes. It was difficult, but I think my couching it in the correct terms and making her understand that it was necessary to discuss eventually and better to do it at this point when she can have some say in the matter. We have avoided it so much that she does not even know what it entails and that much we need to get started on.
And I get it. She has fought hard and has been more positive than I could ever have been in the face of this. That positivism helps me, it helps with the kids and she is a great example to people. There is a point when being realistic has to be addressed and I think we have put much of that off as long as we can.
We will talk to her doctor this week and hopefully get the process started, but I may have to continue to gently push.
This is approximately what I told her today as she checked to ask how I was feeling as I had shared with her that I was not feeling well and it could simply be being overwhelmed all in the hopes of advancing the conversation and helping her to understand without me being selfish about needing something to change.
I can handle a lot, but I think I am losing ground. Even though each day I get maybe only a tiny bit more tired or stressed or worry about you and the kids, it is starting to build up and accumulate. I feel more like no one is getting enough support from me as I am far less than 100%. So there is no satisfaction in helping you or the kids or in work as internally I feel like I’m half assing it all and short changing all of you in the process. Everyone tells me otherwise. That I am doing great. Blah, blah, blah, but if I am getting no sense of it helping and I am simply getting more tired, people’s words are not enough.
I told the therapist today that I feel like I am banging my head against a brick wall every day. It is accomplishing nothing. I am beginning to bleed, but I have to continue. And I will continue, but that brick isn’t really budging.
In retrospect, that even seems like a bit much, but she still asks me to vent to her although I can count the times I have on one hand over the past year or two. It really isn’t anything like being in what you expect a marriage to be, but I have long ago ceased lamenting that loss. For the most part. Living for her is a burden so any desire to unburden myself to my significant other and share in each others problems seems silly with what she is having to deal.
Like others here I have no helpful words, but I do thank you for sharing all of this with us.
Please don’t beat yourself up for being less than 100%, you can’t be superhuman. Just bringing up hospice was a monumental act of strength and courage.
@Tyjenks your ‘venting’ in this thread is incredibly thoughtful and moving. I only wish there was something random strangers like me on a forum could do. Please do not hesitate if you can think of anything, however trivial.
The biggest thing is the understanding I can receive here without feeling I am being selfish in complaining. So often I feel like my day is whining about what I have been dealt. I know realisitically, that is not the case. It is pretty shitty and most days I am simply explaining actual events to people. But it seems so often about me. Every person I come in contact with is being there for me or asking about me and my family or asking what they can do, which is awesome. However, I cast myself in the role growing up and with co-workers as the one who listens and the one who morphs into what the people I am with need from me. That in itself can get tiring, but it is with what I was comfortable. The focus on my family’s needs and how tired I am and on and on, makes me sort of hate what I have become. Again, I realize anyone would be changed by this and there is a required focus on one’s self and that I have done a decent job, but all of that understanding runs up against decades of living my life in a different fashion and that is difficult to mentally overcome. I have grown in my ability to accept help and not feel quite as indebted, but I am eager to get through this so I can help others as they have helped me. I know that is not how it works, but I think I have building a fake NATO invoice in my head that I have to repay.
I even feel I have taken over @tomchick 's thread and I don’t even HAVE cancer. I know that is not how Tom or anyone feels and reading other people’s stories of themselves or their loved ones is helpful, but my brain has a hard time letting things go…if that isn’t readily apparent.
Well, a) no one owns a thread, and b) even if it was my thread, I’d be honored if it could be of any use to you while you’re going through this! And when you say you don’t even HAVE cancer, you’re right, of course. But something like this touches and affects far more people than just the immediate victim. So you kind of do.
By the way, I’m really glad you have a therapist to talk to. He/she can be there for you in ways that your friends and family can’t.
Yeah, the therapist has helped although I often feel I am treading the same ground every two weeks… Half my visits end up being about my ridiculous interactions with conservative friends, co-workers, clients and acquaintances regarding the Administration’s Bizarro insanity, however. I seem to be projecting some amount of my grief and pain into yelling about something else that is out of my control.
And actually, I do understand outside of the forum that the Cancer has plagued the whole family. It eats away at our mental and sometimes physical health and at this point there is not a facet of our existence that it does not touch. On the best days, we never forget it is there, but the kids watch a show with their mom in our bed and the next day we can maybe get her to dinner out of the house for an hour. Sometimes a good day is simply when she is awake and interactive for several hours. More often it consists of me checking on her, getting meds, helping with food while she rests and then we close the bedroom door so the cats don’t get in and bother her. Although, once the cats calm down, she loves having them sleep with and comfort her. It sounds bleak and some days it is just that bleak or worse. Other days, and these are truly the good ones, it is the life to which we’ve become accustomed and we forget that she is dying.
Today I am at work, she was able to rally and get up and dress as friends are coming over with coffee and donuts and she waits on her oncologist to call and discuss hospice now that I have sort of laid the groundwork. And then we will see what’s next.
(I promise to not make this a daily blow-by-blow, but there seems to be a heightened sense of importance around everything these last several days and I am super anxious to get on to the next step)
You don’t have to promise shit. Tell us minute by minute what is happening if you want to. First, it’s a forum, and the electrons are free. Second, we really like you. I almost typed “love you” but I don’t want to trivialize what you’re doing (and what your wife and daughters are doing) within your family.
My wife had a little bit of a scare last month. Typical breast exam found a lump, scans showing its size and shape had the doctor say “probably” not cancer, so we demanded a biopsy. Those few days of waiting to learn the results (which were fine) were enough for my imagination to do some mean stuff in my head (which I kept to myself), and as I imagined the worst I also imagined how I would handle it. I think the honest answer is not anywhere near as well as you’re handling things Tyjenks. You’re an inspiration.
Just letting you know I’m thinking of you today, Tyjenks. If your ears are burning, that’s a whole bunch of us sending you and your family good thoughts and prayers.
I want to thank you all once again. When I posted this a couple days ago, it was a terrible day. It wasn’t all that different from many others, but my ability to deal with them had bottomed out and this outlet helped tremendously. Yesterday was better.
Still no discussion with the doc on hospice. It’s all so up and down. Yesterday, she was up and dressed before I left for work as two friends were coming over. That hasn’t happened in weeks. People give her the boost and determination to get up and go. It did exhaust her, but it was a great day and they were able to gently discuss the benefits of hospice completely organically when why wife brought it up as I talked to the friends after the fact via messaging. This morning, she has barely moved as she is having stomach pains and this leads to the another large, mental stressor when dealing with a loved one with a terminal disease, you never know what symptom or issue is going to be that last one that leads to the final days. Or if there will be one. I have heard all of the stories from people who knew someone with various forms of cancer and their last days stories vary wildly as one can imagine. From just taking a turn and being gone in days all the way to a slow, gradual decline with additional medical measures being added along the way.
She has had stomach pains before and some of that is acid build up due to multiple factors and has prescription Prilosec. However, the liver is where the cancer is the worst and it is not great in the other locations. So pain and a decrease in liver function is expected to be the final signal. So today, she says she’ll be OK. I give her Prilosec, wait on her other meds, let her Mom know this morning’s situation and that she is not needed at this moment and promise to check in after 9 to see if she is better, has eaten and taken her morning meds. There is usually some version of this every day. Hospice seems like a natural choice. Then she has a couple days where she feels OK, sorts some laundry and changes sheets, which are LONG projects that require multiple breaks to catch her breath as the disease in her lungs is probably the next worst area. She points to those days and feels good about them and says she is fine. Who am I to take that last bit of freedom form her if she is not prepared to give it up?
This has been the pattern for months, worsened when the brain mets began to cause more problems and were diagnosed in October. I am comfortable now in continuing gentle pushing towards hospice where I was not before. I would really hope her doctor would have called by today to check on her and discuss as she had promised to do sometime towards the end of the week, but she may today. And her doctor has been amazing in answering message I send via a patient portal and calling to check. My wife, her mom and I have never questioned the doctor’s choices or abilities. And it is not like an urgent call is required as the timing of the decision makes little difference in her immediate condition like if she were running a fever or suffering a more serious symptom. Her oncologist is amazingly responsive and kind considering how much she does and how late she often has to call after completing her work. But when each day feels so long, waiting on a simple check in call that I am now hinging all of my hopes for assisting in moving to the next step creates this huge build up of tension and anxiety while my wife, on the other hand, would probably be happy if that call never came.
I just wanted to chime in, thanks for the updates. Your family is in my thoughts, and I really hope that you are able to continue to maintain your health and sanity throughout this ordeal. So, vent and journal away here, if that is helping you, that is a good thing.
