For one thing. My husband 0p'd out of bladder removal because he didn't want to have an ostomy bag,
Right after the procedure on his bladder, the Dr. came into his room and said they would have to put catheters into each of his kidneys immediately.
He had chemo and radiation.
He lost his taste.
On his check ups, they said his cancer was the same - margins stayed the same.
He was so sleepy he could hardly stay awake
He lost weight continuously.
He got so weak that he was bedfast.
It was 22 months from when he was dxd to when he passed.
I really need your input, because I am feeling so guilty.
Ginny
Have you looked for grief support? That would be very helpful to you, what you are going through is very normal.
Malnutrition/starvation are separate things, but in the end, it was the cancer that forced that issue. The cancer prompted the treatments, the treatments prompted further deterioration of appetite, and on goes the cycle.
My husband's GP kept blowing off not only very obvious TEXTBOOK symptoms but a steady decline in health--I even went to an appointment with him to confront the doctor. That only gave the jerk the opportunity to blow both of us off.
I got him to an oncologist, b/c it was soooo obvious he had cancer, although I respected my husband's wishes too long (he didn't want to "betray" Dr. Jerk by getting a second opinion). But in hindsight, even if I'd gotten him in sooner, it wouldn't have changed the trajectory at that point.
In less than 24 hours, the oncologist called at night to tell me the preliminary findings, which in and of themselves, were devastating.
They stopped looking for more cancer after they found he had three Stage IVs, including "innumerable" bone cancer tumors that had fractured ribs and spine, with two especially high-risk tumors: one in his spinal cord at the base of his brain stem and another (I'm drawing a blank on the location name) that risked paralysis.
My husband was a large (not fat) man, "strong like bull," very muscular, big shoulders, broad back, legs as hard as rocks, and weighed 235 pounds.
In seven months, he was 90 pounds (bones with a sheet of skin) and dead.
I didn't want anyone but me taking care of him. I did okay but by the end I was a bit overwhelmed. And felt guilty, for a lot of things.
Guilt, no matter the reason, is normal. There certainly are things we can do that should make us feel guilty, but as long as they weren't done with malice....
I'll confess that I know on two occasions, in the beginning, I said things I shouldn't have said. Both times I asked if he could forgive me, and with barely the energy to smile or talk, he smiled and said, "Already done."
Talk about guilt. How could I have said those things! Looking back, I was running on auto-pilot...and unbeknownst to me during those seven months, I was scared as hell. That's how my fear came out. I don't allow myself to feel fear, feel scared, but if I had...I might not have said those things.
In the end, we all feel guilty for something, even if you've done everything right. It's just a natural consequence.
Giving you a big hug and sending lots of light and love...and please know, it does get better with time.
Try to switch out your words because they are so important. The G-word you are using, guilt, assumes you could have done something to change the final outcome, but chose not to because you are an evil person. Felons deserve guilt. You are dealing with another G-word which is a whole lot more difficult, GRIEF. Grief understands that no matter another approach, no matter anything, your loved one is gone from you and there is now nothing left but to grief this.
In the grief try to remember to celebrate the life you had together.
Consider a scrapbook or diary in which you write hubby all your thoughts, good and bad. Decorate it with collage; this helped me so much through grief over my brother's death.
You will have moments when you are angry. When I had breast cancer a year later an xray showed problematic area in the lung. It was a false alarm and that was 35 years ago, but at the time I sat my then partner of one year down and told him I would not be fighting. I was a Nurse and recognized what a spread to lungs meant. I would take "the good drugs" and make the most of the time we had. He said "I will honor your decision because it is your decision for yourself, but I wish you would fight harder to stay with me". You can imagine, had I gone on my way, he would have had moments of anger at me over this?
Grief Counselor Megan Devine wrote a memoir about the loss (drowning) of her husband who was 39. In it she says that grief cannot be cured. It has to be carried. "Words are amazing and they matter. Words can make a gigantic difference between carrying your pain increasing your suffering." I encourage you to seek grief counseling if you need it. I encourage you to let yourself think and feel anything you want any time you want. I encourage you to seek support groups.
Remember, we are individuals. What works for one person may not help another, and grief is as individual to us as our own thumbprints. You have a RIGHT to your grief and no one can tell you how to handle it. There's no timetable. There will be times you will have moved on a bit, a tiny smidge of joy will leak through, and then you can be shocked by being blindsided by acute grief again. Avoid people who tell you to move on. THEY are the ones who may be tired of it. You are doing the work for you your own way.
My heart goes out to you. I am so sorry for your loss.
Guilt is so common...even in cases where the patient 'tried everything', hospice supported pt in having a peaceful death at home, and family members still find reasons to feel guilty about something they did or didn't do. I think it is our human desire to be in control. Grief is about not having complete control of feelings and thoughts, and it is very much expected in this period of acute bereavement. Your world has changes so completely with the loss of your husband. Get the help you need, and deserve. try googling 'grief therapy' or 'grief counselors'. Beware of any that seem really out of the mainstream. and let us know how you are doing.
Denial
Anger
Bargaining
Depression
Acceptance
There is a 6th stage of grief thought to be "Finding Meaning" because oftentimes, a loved one is lost after the caregiving ends and they're alone. "What now?" is often the question that's asked.
Check out this excellent website which discusses the stages of grief in detail:
https://grief.com/the-five-stages-of-grief/
You can purchase a book on the subject as well. Consider getting some grief counseling, too, so you can let go of the guilt you are feeling at the loss of your husband.
Sending you a big hug and a prayer for peace. My deepest condolences over the loss of your husband.
P.S.: Thank you for your very thoughtful and kind words to my original post to the OP.
When your loved one dies, your whole world falls apart. Most of those people simply disappear. Grief counseling is usually brief, and doesn’t help the way you might hope. Your relatives and friends haven’t just been through that overwhelming experience, and it’s hard to relate. Your own grief consumes you. The ‘what if’s run through your head over and over again. I was much younger, with children who were staying with relatives while I moved in with mother, and I had to get back to work, which was hard. You may be spending much of your time dwelling on the past, which is even harder.
It will be a help for you to make some real changes in your day-to-day life that will make you think of other things. I managed a 6-week trip with a small group of people I hadn’t met before. New things to see every day helped me to have times when I could forget the bad bits, and focus on the present and the future. Can you think of something like that which you could do?
Your dear husband would want you to remember him without so much pain, and to enjoy the rest of your own life as much as you can. Could you do it for him? Love, Margaret
You mention guilt, but you should be encouraged to change your G-words. You are not a felon and you are not God. You aren't responsible for the cause or the cure. You have not done malice aforethought--that is the type of action worthy of guilt, and those who DO those actions never FEEL guilt. Your word is GRIEF. You are grieving, and this is worthy of grief.
Grief therapists tell us that we have ways of tricking ourselves out of going into the final stages of loss and grief. One of those ways is to trick ourselves that there was something that could have changed the outcome (as though that "something" was still available and we could magically change the outcome. Another way is to concentrate on would have/should haves instead of concentrating on the reality of our terrible loss. Sometimes this keeps us safe for a time, so that the grief doesn't overwhelm and devastate us, but it can become habitual and we can be like that mill pony walking in circles in the harness of habit, carrying the heavy mill wheel in circles endlessly.
Ginny, I am so very very sorry for your loss. I encourage you to start a journal to help you think our some of these things, but more to write letters to your hubby celebrating the time you had, the love, the fact you saw something that day you need to tell him. Decorate it with pictures of him, or of things you want to tell him. This helped me enormously in the loss of my beloved brother.
If you wish to go to grieving counseling or support groups that can be an enormous help in knowing you aren't alone in the ways your mind is working.
We are protected sometimes when we are widowed because that first year there is so much we have to DO, there is so much support. Year two that all falls away.
Get help for yourself and know that your continuing to grieve and walk these endless hopeless circles does your beloved no honor, and it would pain him to know you are doing it. He had his life, he made his choices. You honored those choices of his.
My heart goes out to you in this loss. I am so sorry for it. I wish you so much good luck going forward. I so hope that you will continue to communicate with us. We have had many people write us about grieving. One in particular, Laurabelle, I have watched take the tough journey from pain and guilt to enlightenment, and she's sometimes here to help others. I hope she sees your post.
My best wishes to you.