Hi, I'm new to this forum, but I really needed to find a place to "vent".
I am a geriatric nurse, with 20 years experience, and a specialty in dementia care. However, as of March, I quit my job to care for my husband's landlord, who has terminal cancer. This man has no family, at all. He never married or had children, and is the last surviving sibling in his family. He does have a couple of neices, but they have never met, and as he put it, he isn't interested in meeting them now. So hubby and I are all he has. He has made my husband his power of attorney, and the executor of his estate. We will be his only heirs.
Here is my frustration. This man has been single all his life, and is a narcissist. In his mind, no one is wiser, no matter what the subject is. When he was diagnosed in December, his doctor gave him 6 months. His cancer, which is in the lymph nodes in his neck, and on the back of his tongue, is inoperable. He chose not to have chemo or radiation. Instead, he ordered something over the internet, that is a combinations of minerals and vitamins that are supposedly a " miracle cure" for cancer. Personally, I think it's a bit of a scam. This "protocol" (as he calls it) cost thousands of dollars. He is also supposed to follow a high alkaline diet while doing this protocol. This diet consists of all vegetables, no meat or protein. He has lost 50 lbs in the last 4 months. He has also broken out in an itchy rash. But he insists on following this protocol, and nothing else. He swears one tumor is shrinking, but there is now another on the other side of his neck, and he said he has lumps in his groin and under his arms. He is also having extreme pain in his lower abdomen. He refuses to go back to a doctor. Since I am doing private care, I can't get him anything for the pain myself. He is a three pack a day smoker. He has researched alternative treatments, called Mayo Clinic, only to find out that he isn't a good candidate for any experimental treatments. He is now researching a proton therapy, based out of Oklahoma. Truth be told, he is too weak to tolerate a trip to town, let alone a 12 hour trip to Oklahoma. I know he is grasping at straws at this point. He has said that he doubts that he will make it another month. In my opinion, he's right. But, he won't slow down. He wanders around the house, barking orders at my husband, and micromanages everything I do, from starting laundry to making his food. Nothing I do pleases him. I wish he would just relax and rest, but he refuses. I honestly don't know what is keeping him alive at this point. He is so very week. He barely eats, maybe two or three bites of a meal, once a day.
As a nurse, I just want him to be comfortable and happy in the time he has left, but he fights me every step of the way.
I once prayed that my mom would do something differently - at this point I can't even remember what it was, I think it was to try something new, maybe a different wig or outfit or a different activity...and that was my startling answer, that she was doing what she thought was right and it would not be taken away from her. I don't know that it was as far wrong as your caregivee is doing, but I do agree that the principle is the same - his need to do it his way is important to his integrity as a human being. Maybe he will take a Tylenol or two if he has a lot of pain rather than just drifting off into confusion and coma at the end, or maybe you and girlfriend will just be rubbing his forehead with a cool cloth...though you can't be the nurse to him that you would like to be, you are *there* for him and that counts for something.
Leave when your husband arrives, no need for two people at the same time.
A doctor I worked for once comforted me when a patient died, in a trailer, not found until after 3 months! He said, let people die the way they have lived. This man died alone, the way he had lived. It was sad.
Glasshalffull- He will NOT allow Hospice at all, I've repeatedly suggested it to him. His refusal is based on the fact that he doesnt want to see any health professionals AT ALL. He would have to have a doctor's recommendation to get Hospice.
Draw up a set of rules for how you treat each other. And consequences when lines are crossed...you are taking care of him but not his servant.
Get protein powder and spike his juice...but if he is set on this path, there is not much else you can do.
Praying for you! You are a kind and generous soul!
JessieBelle, you are ABSOLUTELY right about the protocol! I have researched the side effects and they aren't pretty. I even typed them up and showed them to him, but it didn't matter. He is constantly telling me that he has to break the cachexia (wasting away) cycle, but he refuses to eat anything besides the vegetables in this diet. I care about him, but I feel like I'm watching him kill himself. He has declared in his will that he wants absolutely NO medical interventions, at all. No feeding tubes, trachs, not even IV pain medicine if and when the time comes.
I feel like I'm banging my head against the wall.
Something that really bothers me is the scamming about the supplements and diet. We know those things won't work. I wish they would outlaw these companies that give false hope. These companies are nothing but pickpockets, taking money out of the pocket of desperate people.
Many of us here deal with angry and abusive care receivers, so you have found a good home to vent away.