Support for caregivers: I feel helpless not being able to fix things

As caregiver to my wife, I have learned to always be there or be close by. That is a challenge for one who has wanderlust, but learn I have. My brother passed last October and I am in charge of his estate so I have been spending lots of time at his house organizing, discarding, preparing for sale.

My wife had stage 2b pancan. She had Whipple surgery and recovery was a bear. She was on TPN for two months, then g-tube/j-tube for 5 1/2 months. Finally, we were able to wean her off the tubes and get back to eating.

She has lost a lot of weight, just skin and bones now. But she is eating and we think gaining some back. We concentrate on anything she wants, protein, overall calories, and things like full fat yogurt. She is taking Creon and that is a blessing. I have discovered that she tolerates meat quite well. Last night, spareribs for example. When I am coming home from my own appointments and ask her if I can pick up anything, she asks for a hamburger and shake. By the time I get home, half the shake is gone, but that is okay with her. She eats only half the burger and half the shake, if that.

Acceptance and Faith are essential tools in this battle. The first deals with reality and the second deals with knowing that there is a higher end to all this. Death is a sexually transmitted disease acquired at conception. But death is not the end, it is the new beginning of eternal life.

Faith, Hope, Love.

I'm sorry you and your husband have joined this club. It is sad and scary. My husband was white water kayaking and skiing and backpacking... often the strongest in our group... and now can barely walk across the room. Spends most of his time watching tv as getting off the couch is a chore. I wish I had magic words for you, but like you, after finding him on the floor a few times, I am afraid to leave him alone. I just got a walker for him that he has not used yet, but the day is coming. My only advice is to keep pushing the doctors if you think things are not happening within a reasonable time period. I can send messages to the doctors through the hospital portal and I have done that to make sure they are aware of his rising CA19-9 numbers... and let's make an appointment for a scan to see what is going on. He has 4 MRI's and a CT scan scheduled for next week along with chemo and several doctor appointments. Town is an hour+ away... but that is ok. I want the doctors to stay on top of this. I recognize that I need to be the strong one in the house now as it is just my husband and our dog. But it sure was easier when Dan was the strong one.

Iam new to this site... I just want to admit... I feel helpless.... we are 5 months in.... its very hard to see my once very strong, independent husband so fail and helpless... I try to be the strong one, but I dont exactly know how... he has ALWAYS been the strong one in our marriage of nearly 40 years.... I am scared to leave him out of my sight for one second... Iam screaming and crying inside, but try to not let him see me cry..... Can anyone give me some advice?

Hello,
My husband was just diagnosed with Pancreatic Cancer in October.... we didnt even know... he turned Jaundice and we thought it was his liver.... after scans and bloodwork, and a scope w/biopsy... Cancer was confirmed...
Try different protein bars and shakes.... you may have to purchase numerous ones until you find one he likes... ... its very hard... I feel helpless as well....... Unfortunately after a laparoscopic surgery they found a few more spots that were cancerous... so now the Whipple surgery has been canceled. We are both very disappointed... they changed his chemo meds, so hopefully this will start bringing his CA19-9 numbers down.. Sending prayer to you and your husband.

Sounds like you have the very best attitude for the journey. May God bless you both and your beautiful family. My son has really been my support through all of this. So blessed to have him...such a comfort.

My husband is much the same. He gets angry with me when I try to get him to eat something. He says he is doing the best he can...I know he is. It is so hard to watch someone that was so strong fall to this horrible disease. Keeping you both in my thoughts and prayers. Keep positive...

You are definitely not alone. My husband had a distal pancreatomy in July 2024. They removed the Body and Tail of the Pancreas along with his Spleen. Many serious complications that set him back by several months. He lost over 50 lbs and was not eating much at all. Some days he would want something and I ran out to the store and brought it back only for him to tell me he did not want it. Other times, he would eat something and tell me it was really good so I would go ahead and make more and he would tell me he could not eat. Oncologist suggested CBD oil to help his appetite. I talked to a friend who had gone thru something like this with his Aunt and he suggested RSO Capsules. ( Rick Simpson Oil ) I did some research and was able to get them. They have been a Game Changer. He has gained 30 lbs back but if he does not take them,
he has no appetite at all.
I am at University of Penn today with him. They are doing a Lung Biopsy because he has nodules on his lungs and one has continued to grow. He also has a lot of pain in his right side, abdomen and stomach so after we get the results from the lung biopsy, they will do another PET scan to check his Liver,
It truly is a Journey that we are all on. My Husband and I will be married 50 Years in July and have 3 Wonderful sons and their Families who are always there when we need them. Going thru all of this together has made us even closer and love each other even more than we ever thought possible. We are trying to enjoy every day that we are together.

Your message helped me as well. Just knowing I am not alone. The internet isn't always used for good, but one of the best things to come from it is that you can connect to others who are going through similar journeys. I am grateful for that. 🙏

I can relate. Every time I think I found something my husband can taste or take a small bite , it goes out the window. He gets frustrated and angry and asked to be left alone. He reminds me that he is trying and do want to eat , but I don’t understand. It breaks my heart hearing him saying these words because I know he feels like he is alone. I try not to cry in front of him, but sometimes it cannot be helped .
My prayers goes to all of us that are in this same journey.

Thank you so much for your reply and kind words. You could not imagine how reading your and others comments helps me get through the beginning of these journey.
Wish you the best for you and your husband as well .