Extremely frustrated caregiver.

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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.


cattycrz, welcome to the forum. Just put yourself in your landlord's place, you probably would be grasping at straws trying to find something to keep you living longer, and in the meantime being upset knowing your days are numbered. I know I would be a bee in someone's bonnet if I was in that condition.
cattycrz, vent away. I know there is little that you or anyone else can do, but we do need to talk to people about what is going on. I think in this instance I would take a deep breath and say that it's all in God's hands. I'm not a very religious person, but I find a lot of peace just letting it go. I have a feeling that it won't be much longer. He is a difficult person, I know. If you consider the source of the words, they won't irritate and sting so much.

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.
After I wrote this I remembered my friend in TX who had throat cancer. He lived seven years beyond the expiration date given by the doctors, even though the cancer had spread to his lungs. He still smoked a couple of packs a day, even though he had a trach to breathe. He was a very kind man, though, and not a problem to anyone much. I used to give him rides to different places and liked him very much. I don't know how he kept going -- he was so weak. Looking back, I think his love of cigarettes both killed him and kept him alive at the end.
Thank you both for your comments!
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.
I have a feeling that this bothers you a lot, because you are a nurse. You have all the skills, but can't use them. It would embarrass me a bit, because I would be afraid people would look on and say I was not doing things right. I wish he would let you do things a better way when it comes to diet and medications. I wish he would stop being fooled by the scamming quacks. But I know that all you can do is turn this one over. I just hope you can stay sane around his craziness. What does he let you do for him?
So will he allow the Hospice folks to come in? Sounds like they might be helpful. How about a counselor for you or him or both? Is he/was he ever religious? perhaps a faith person could help.
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, he lets me make his coffee and serve it to him in bed, along with his morning protocol, which is 2 tablespoons of liquid stuff called max strontium, mixed in a couple ounces of club soda, and three capsules of a mineral mix. Then once he's up and moving, he eats breakfast, usually consisting of a few bites of spinach, asparagus, or cantalope. Around noon, he has veggie juice with powdered stuff, 30 drops of this, 10 drops of that, from his protocol, and two tablespoons of cesium chloride all mixed in. Then we sit and he watches Fox News all day, sometimes nibbling on whatever he has for breakfast. He makes phone calls, makes plans for his yard, deck, whatever, and when my hubby shows up, barks orders at him. I tidy up the house as it's needed, fetch his cigarettes or phones, and that's about it. He lays down in the afternoons, and I usually head home for a few hours. Then back to his house, hopefully before he wakes up. Make coffee, another protocol mix, and if he wants supper, I make that, though usually he just eats a few crackers or chips. I stay til he goes back to bed, then do it all again the next day. So...I am not doing any real personal care at all. I just kinda hang out with him.
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.
Glasshalffull, he is not religious at all, and believes couselors are a waste of time and money, and he knows more about everything than anyone. That's just how he is. In a way, my husband and I are like servants. As crappy as this will sound, the truth is, we are in line to inherit a substanstial estate from him. He has ran off any friends he ever had because of his superiority complex and the way he talks to people. My hubby has rented the land for 15 years, and has seen them come and go. What is left of his family, (two neices) he has never met and has no desire to. We are the only ones left.
I'm assuming that as a nurse, you've seen end stage cancer pain. I think pain nanagement is something that uou beed yo fiscuss with him, totally separate from whatever protocol he's following now. Temember the movie, The Shootist, with John Wayne and Ron Howard? Get him to watch it.
You are a health professional. You are allowing the patient to turn you into a servant, with a promise of an inheritance to come. Have him pay you now for services, cut back your hours to what you are able to provide comfortably.
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.

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