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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.

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Still reading this as you go through this difficult time. Don't forget to take breaks.
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As hard as it is to watch, this man is doing what he thinks is right, and it may be his only consolation.

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.
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catty, it sounds like a hard time. The girlfriend sounds like an angel who came in to help at just the right time. She sounds like a jewel. I don't know if he is getting close to the end. It can be such a roller coaster ride in late life. I do hope that he finds some peace before he leaves. He seems like such a troubled man.
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I'm not sure if anyone is still reading this, but I thought I would update it anyway. I have seen a significant change in the last couple days. I stayed with him through the weekend, and a girlfriend of his came out Sunday evening. yesterday husband and I were busy, so we only saw him for 10 minutes or so. he was extremely grumpy yesterday,and very tired and weak. we arrived at his house around 9 o'clock this morning, girlfriend is still there, and said he had a bad night. she said he was awake between 3 a.m. and 7 a.m. then went back to bed. he woke up around 11:30 this morning, and was very confused. he kept asking me if I was leaving, and for a second I don't think he ed to stay with the girlfriend offered to stay with him, so I went outside to help hubby. after coming back in to check on him a few minutes ago, he was dressed and in his recliner but could hardly keep his eyes open. he was confused as to what hubby and I were doing, and we had to repeat herself several times. to me, the man looked like death. I have never seen him so weak tired and confused. it's just my opinion, but I think we are very close to the end.
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We are still plugging along. He is still very week, and today he seemed more restless than usual, and very grumpy. I ended up calling and talking to a hospice nurse friend of mine, who just verified that nothing can be done unless he agrees to it. Tomorrow I am going to try to have a serious conversation with him. Wish me luck, I'm sure I'll need it! Will update when I have more time!
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This situation is difficult, I agree with nojoy that you will have to do this care on his terms. What a tremendous gift, to be able to have someone at the end who will give care how you have asked. That is rare.
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It is May 6th. How are you doing now?
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As a healthcare provider you know that dying is not easy for a lot of folks. Some people accept their fate with grace and dignity others fight it until their last breath is gone. People with certain personality traits seem to approach death differently. Those people who are very controlling in their lives sometimes seem to have a harder time accepting their fate. Your neighbor sounds like this type of person. You are not going to change him, all you can do is accept him where he is at in his journey. Fear can also be a driving factor. Imagine how frightening it must be to have no family, no spiritual beliefs, no real control of your fate etc. To a person who is used to being in control this must be an unimaginably frightening time. His barking orders and micromanaging may be his attempt at maintaining some control. Hard on you and your husband no doubt. This man needs help and he's lucky to have you and your husband care for him, but you'll have to do it on his terms.
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The will and trust are complete, filed, and we have the originals in our possession. The will specifically states that anyone contesting anything will automatically be struck from getting anything. He specifically wanted it thay way. It also says the no one is liable for decisions he made about his treatments. If nothing else, he was thorough about that.
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I agree that the nieces may contest the will, even if they have not seen him. "They" come out of the woodwork when money is involved, and it sounds like quite a bit! I would make sure all the legalities are tied up tight, or be getting paid!
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As a nurse, administering this questionable protocol without a doctors order, does that leave you in a vulnerable predicament both legally and as someone who will receive an inheritance? The nieces can contest the will, if the will exists? Hope you can find out. Maybe this is part of your frustration, caring too much without the support of the medical community, going against your training as a nurse so it is all on you. You have been pressured by a controlling narcissist. Back up.
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I can tell you care. Use your professional boundaries, take a break. Allow your husband to take charge, or this landlord will divide the two of you. Enjoy life.
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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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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.
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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.
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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.
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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!
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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?
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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.
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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.
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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.
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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.
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