What tips do you have for the caregiver after a total pancreatectomy?

@christinemb I am new to this forum. But I hear every word of what you are saying. I’m sitting in the hospital while my husband has his 5th procedure to drain nercrotic cysts and adjust the stents . We have been going through this for over 4 months. I’m thankful for the doctors that know how to do these procedures but no answers other than waiting. My husband was actually home for 5 weeks this last time but stubborn and in pain for 2 of those weeks. I am trying to keep an every large house and yard afloat while still raising 2 teenage grandkids. I am pretty strong and also sooo Angry about all of this. Today when he left for the OR was the first time I felt totally hopeless and sad. I’m not a crier but today I am. Hugs to you.

@sdsharp, just checking in. How are YOU doing today?

I've been better. With all the sitting around in the car and at the doctors' and other medical offices, I've gained some weight and that's been depressing. I can't seem to get back on track with my diet and the lack of prognosis for my husband's situation hasn't helped. Thanks for checking in, I really appreciate it.

@colleenyoung my husband had his 8th procedure on his pancreas yesterday. Our daughters came from out of state to see him for the first time since he became ill. It was very hard for all of us. He was in the worst pain ever since they had to do so much once they got in there. It’s very hard to keep this all going

@christinemb, caregiving can be all-consuming. It can be a real challenge to take care of your health. First, I would say, be kind to yourself. And do what you can do. Even little things can help. For example, when you drop off your husband for his appointments, are there places you can walk instead of waiting in the car? Do you like to like to podcasts or music and walk?

@sdsharp, the family get together must've been hard. I bet your husband didn't want to be in such pain with visitors and your daughters found it hard to see him that way. It's a harsh dose of reality and what is going on. And you? How are you keeping it all going? What or who supports you through this?

While I appreciate your taking the time to offer suggestions, you've made some assumptions that are simply not true. There is no "dropping him off" for his appointments. I attend each and every appointment with him not only to provide support, but to take notes and ask questions he may not have thought of. "Waiting in the car" is not, and never will be, a thing I do. Several of his appointments have not been close to home, either, as not all the specialists he needs to see are in our local area. As an example, in a recent 6 week period, we made a dozen round trips of over 225 miles each. Just a couple of weeks ago, the specialist he needed to see is nearly 6 hours away. Of course I walk when it's possible to do so, but there is still a lot of sitting in the waiting rooms and in the doctors' offices.

@colleenyoung If I ask people will help. I just have such a hard time asking. My husband is home from the hospital for the 7th time in 4 months. I hired someone to finish the weeding and spreading bark dust while I was making trips back and forth to the hospital. I honestly could not do this without the help of my 20 year old granddaughter. I feel guilty everyday that she is putting her life on hold for us. The only good thing about the heavy meds for pain management is he hasn’t noticed the beautiful landscaping.

@christinemb, my apologies. I mis-read your statement "With all the sitting around in the car and at the doctors' and other medical offices" as one action. You were actually saying sitting in the car to drive to the appointment AND the sitting in waiting rooms and appointments etc. So sorry for misunderstanding.

That mis-reading must've really hurt you and for that I apologize. You have enough of a caregiving burden without my misinterpretation.

@sdsharp, I'm sure you also feel grateful to have your granddaughter helping you. I'm glad she can be there for you. I wish I could banish guilt from the caregiving experience. You might be interested in this discussion on the topic:
- The Caregivers' Guilt Dumpster - Open for business https://connect.mayoclinic.org/discussion/the-caregivers-guilt-dumpster-open-for-business/

It was a discussion started way back in 2016 and remains active up to today. It's a good place to dump the guilt and connect with other caregivers who get it.

It is so hard to ask for help. When my mom was caring for my dad, I reminded her that people want to help but that they often don't know how or what. By asking for help, you're giving them the gift of knowing what they can do. 🙂