Staying strong and facing an uncertain /certain future

@jprust I remember this exact syndrome of everything making me cry. Some of this for me was the initial shock and grieving of our life as I knew it. It was the scariest time in my life. This initial time did pass, I still have sudden bout of crying occasionally when I think I can’t take another loss and I am facing it anyway. It breaks my husbands heart to see me crying and unable to stop, so I go outside, barn, garden, shop or just out. I have given myself permission to just sob it out, and then put it away for a while and get back to the business of making the most of our time together.
This has morphed into a ritual of pushing it all aside and giving myself an hour once a day to worry and grieve, during the rest of the day if it starts to creep in, I just say “nope this is not the time, right now is time for enjoying, cooking, dinner, laughing, whatever the moment is”.
I also sometimes have to ask myself what am I grateful for in this moment.
These things help me to stay in the present. I read a line to the effect of “try not to be so focused on what will happen in the future, that we miss the joy today”. I don’t remember it exactly, but it stayed with me.
Is there a social worker connected to your husbands clinic that might be able to connect you with some resources for you, while you care for him?
Have you started to develop any coping techniques yet?

Thank you for your common sense approach to this thing. I learned this strategy of staying in the moment and also allowing myself some time to go and cry as a teenager when my mother died. I also used it in my 20’s when my husband went off the rails with bipolar. It just popped up this time with more force than I expected.
I would ask myself, “What would I be doing right now if I was happy, or feeling peaceful or loving?” Then I would do that-go swimming, or for a walk, or talking to a friend, or dancing.
You are so correct, there are so many positive things to focus on to be together now. Nothing is happening now anyhow-just waiting for a call after the referral. Could be months or years before anything happens.

I’m so sorry you’re going thru all of this. I’m in the same boat - my hubby has been on hospice care for over 100 days for stage 3b esophageal cancer, myasthenia gravis, and pacemaker placement due to total heart block. Things have been stable for a while, not much change in my husband’s condition. Just recently I’m noticing a small decline in his health status and hospice is also noticing it. It’s like you’re waiting for the other shoe to drop. I constantly worry if today is going to be the day that he gets worse and stays bedridden. No one can give you a specific timeline as to when or how your loved one will decline or pass away. I cry a LOT by myself. I have support of family and friends but they sometimes just don’t understand what I’m going thru as a caregiver. Hardest thing I’ve ever done in my life is caring for him, but I’m so blessed that I am healthy enough to do so. Take a few hours and go somewhere to recharge if you can. That always helps me, and believe me we as
Caregivers need that!! I’m sending you BIG hugs and if you ever want to reach out and chat, you’re always welcome to contact me personally. I hope you can find some comfort and peace thru all of this. No doubt, it’s terribly hard.

Oh, I am so sorry that you are going through this. My sister’s husband had oropharyngeal cancer and refused any treatments. He was not in hospice until the last few weeks. It was so difficult.
Caregivers are very strong.
My husband asked if I was teary eyed because of what was happening to him. I said I was teary eyed because of what was happening to us.

I really understand what you’re saying. I truly long for the couple we once were. Our roles have completely changed due to the circumstances of his terminal illness. One day at a time. 🙏🏻

@jprust and @caregiver29, just checking in. How are you doing?

@jprust, I'm so thrilled to have a speech-language pathologist in the Mayo Connect community. I bet @caregiver29 knows the value that SLPs add to a care team, especially as a caregiver for someone with esophageal cancer.

Caregiver29, how is your husband doing?

I come back to my original question for both of you: How are YOU doing?

Thank you for asking. Initially I did a week of crying, and making phone calls to see about different transplant centers criteria. My husband and I talked about my efforts. He said he was not going to aggressively pursue anything as he doesn’t believe anything is imminent. He said he doesn’t want to read about it, talk about it or think about it. He will make decisions as necessary. He said he has to do that for his mental health. There is nothing happening right now as it could be months before the transplant center even calls. He still functions fairly well-he takes piano lessons, we play dominoes every night, he does some things around the house. He just sleeps a lot-maybe 15-18 hours a day.
I have stopped crying all the time. I realize that this is something I have no control over, except to be supportive and listen to what he wants. This is the part of life that is very hard. But I am also very grateful that we have had each other’s back for 53 years(in December) .

I read your post last week, and thought back to it this morning. My husband started chemo treatments for colon cancer November 30th. He was diagnosed two years ago, and after three and half months of chemo at that time, he had surgery for the tumor. He had a couple spots show up one year ago, and had chemo again at that time. He had clear scans following and then this September a PET scan showed multiple lymph nodes and a nodule on his abdomen. So he began chemo again. He had his second treatment of 4 (or 5) last week. He had been doing fine, continuing to work, etc. However, yesterday he felt awful; nausea, fatigue, could barely get up, and ate very little. The memories of two years ago, when he took this particular chemo, I believe Folfox, came back. It is just so hard to watch, and he is suddenly like a different person again. I have notified the oncologist's office, and they will get back to me. But I just needed to vent about the awful side effects and that feeling of your life being on hold, again…..
So thankful for this forum.

I am very sorry to hear about your husband’s reaction to the chemo and his return of cancer.
I am learning how to be an adult about everything-and I am 73. We have been married for 53 years in a few weeks. I should be grateful for all the years we have had together. But I want more. The life we had has changed-I was not ready for that.

Thank your for your kind words. We are both 67 and married for 42 years. The roller coaster of the past couple years has pushed me in ways that I never wanted to be pushed. I try to take it One Day at a Time!
Congratulations on your 53 years together!