Support for caregivers

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?

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.

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.

Oh yes, its very hard... I am trying... Our daughter moved back with us, which is a big help... but we are scared and worried.... we are considering a 2nd opinion.... although our Doctors are nice... I feel they could be doing more..., I feel they are giving up on is because it metastasized... but I am being my husbands advocate... the best I can... this is all sooo scary to us.

We are in much the same boat. Not feeling like much is being done...so frustrating. Sending prayers to you and your loved one.

Thank you, and to you both as well

You will start to get stronger because you have no choice. My husband of 38 years did everything for me. After a year of this journey I am doing most everything...some things I didn't think I could. I have found that doing things keeps me busy which helps...he is still my rock and i love him more than life itself. Our roles have changed but my hope is that it will swing back and he will get stronger. May God keep us all well.