My dad is 87 years old, he was diagnosed with prostate cancer recently. I went into the dr with him the first couple of visits, and the dr told me what was going on. The third dr apt., I started to go in with him but he loudly told me no, in front of a waiting room full of people. He cannot hear well, and if he doesn't hear something he won't ask anyone to repeat what they said and he will not ask questions.
From what I understood, he was going to get a shot every 4 months for the cancer and they were going to watch it closely. He did have a cat scan done, I was not allowed to take him, he went by himself, and he got confused on where to go in the building, but blamed it on the people working there did not tell him the right way to go
The other morning he received a call, my mom does not have a clue who called and he said that he was getting radiation treatments but it was not a big deal and getting these treatments are nothing.
We do not know why all of a sudden this has happened, don't know when or where, his response was I will let you know. He has a dr apt Tuesday morning, my mom wants me to take him but she doesn't know what doctor, time or place and he isn't talking.
My mom has her own issues, she has copd, and is on oxygen, her legs are swelled up and she can't hardly walk. There are also mental issues with her also, she was so mad at me one night when I called the paramedics for my dad, she was in the kitchen slamming the cupboard doors and yelling, I knew you were going to do this, I should never have called you, plus she threatened to call the cops on me and kicked me out of the house. My dad was in the hospital for a week and the er dr took 2 liters of urine out of him, but he felt fine.
It is pretty much me taking care of them, my 2 kids help as much as they can, my sister lives out of state, she said she is hoping to get up here in a couple of weeks
I am at the end of my rope, I don't know what to do.
You cannot force anything on them. By the same token, if they don't cooperate, they cant expect you to accommodate their demands.
Let this all devolve upon their heads. As we used to say at work, YOUR lack of planning does not make this MY emergency.
Step back. Breathe deeply.
It is so frustrating when our parents act like we are trying to take them when all we want to do is help.
I have seen, heard and read soooo many stories about seniors trusting those they shouldn't and can't and distrusting those they can and should. Arrrggghh!
You are in a position that you will just have to get off the train so you will be able to help when the train wreck happens and it will. Try not to fret and worry about the things you can not change, you will be exhausted and it does no good. Just know that things will get to a certain point and then they will have no choice, then you can help.
I personally only needed to know if he wanted what is called full code, meaning everything and anything to keep him alive or DNR do not resuscitate. That gives me enough information to make decisions, because I will ask about prognosis and quality of life and make my final decision based on all the information, because I know that no one wants to be in a facility with a feeding tube and an incubator and that is all that is left of him.
Maybe the nurse can pull some strings as well.
Here's to her getting them to agree to the medical POA.
Can you and your sister agree on getting your parents to get POAs in place, these are needed usually in an emergency and there is no way to obtain them at that point. I think that your parents don't understand what they are, can you possibly get an appointment with a certified elder law attorney (www.nelf.org) and have them explain exactly how they work and what the intention of them is. Reassuring them that you nor anyone can just take over their lives because of these documents.
I had to tell my dad that if he didn't sign, which was completely his choice, that the next time he ended up in the hospital I would walk away and he would be at the mercy of the doctors, because I couldn't fight the system again to ensure that he received the care he needed. It took years off my life and he doesn't get anymore. The hospitalist said he told him, in a room by themselves and my dad sick out of his head, that he didn't want to receive care and DNR. I fought like crazy to get him care, what kind of doctor does that? So, you can give me the ability to ensure your wishes are fulfilled or you can take your chances, but I will not go through that again because you don't trust me. I also said it doesn't have to be me, anyone that he trusts, it just had to be someone. No one knows how stressful that type of situation is, nor can you even imagine that would happen, but it does and when you need that POA it is usually to late to get it.
Do some research so you understand what it entails, because nothing you have posted would have been changed with a POA. It doesn't give you control over your parents, it allows you to do that they would do for themselves if they were able. That is the intention, can that be abused, yes, but it is a risky business that could land you in jail if that authority is abused. (Not saying you, just in general) that is the big concern with people, that the POA will get on a power trip and force them to do things they don't want. That's where a certified elder law attorney will be beneficial, they can write the POA in a way that helps minimize the potential of abuse.
Best luck, your parents sound like they have always been a bit challenging.
The *nurse* - a trained professional - is finding it difficult to get a grip on your parents' complex situation. So at the very, very least, forgive yourself for finding it a bit of a whirlwind. It isn't you, it's them: this IS incredibly hard and there's a limit to what you can accomplish.
So with that in mind, just take deep breaths and get your own balance back before you head into battle again.
It is very good news that you are on the HIPAA list - information will be the key, but there's a lot of it to sort out and then absorb. You can't rush any of this.
You may need to do the “good cop/bad cop” with your sister. Let her be the one who calls and talks sense while you “act”. We worked that to our favor with my BIL who lives out of state. He takes care of their finances-long story-so we made him primary POA and my hubs is secondary. That felt less intrusive to them, and we were able to frame it that BIL needed those documents signed to give him legal authority to conduct business for them. There are more than one way to skin a cat. Indirect/less conflict worked for us.
They can still pay their bills and take care of the house, not as good as they used to, so they are not at that point where I can get poa. I do think it is getting close to time, I really do not think my dad is understanding what the dr is telling him. He is the type of person that you do it my way or no way. There is no having a sensible conversation about this
Here is the problem, a man like this is not going to listen to you. You have apparently no medical power of attorney, and whatever the case is you should now have this for SURE. Because it sounds as though your father is not making sound decisions right now, nor even getting and computing information, and he for certain is either not knowledgeable about the side effects, or not telling you and his wife. The doctor at this point SHOULD BE REQUESTING someone have POA for health care. And he is not. Making me question as to whether or not Dad is being treated as yet another elder cash cow. I do not, as a nurse, even recommend PSA and other prostate cancer testing for elders (I go so far as to include for myself no mammograms since age 70 despite hx of breast cancer, so pay me no mind. And perhaps read Barbara Ehrenreich's book Natural Causes, about medical testing and treatment in the elderly).
I would say to Dad "If someone told you that the treatment of prostate cancer doesn't have side effects they lied to you; the first and most prominent side effect is incontinence of urine and there are others. You may be trying to spare Mom and me from the truth, but you may not know and you may be sorry if you do not know; so let's work together here".
You do not say if your father is demented at all? That is a big question here. If he is I would say that you need to get guardianship and medical power of attorney, with the help of your mother (who should accompany you to elder care attorney and request this because she cannot now DO it). Take that at once to all MDs.
This is very serious business now, as your Dad can be HARMED by medical treatment at this point. Please speak with him about SERIOUS and life-changing side effects he may have with any treatment option. Get up to speed yourself on the treatment options by google at once, and ask him for POA for medical decisions and the right to accompany him and help him wade through information. If he refuses, take the bull by the horns. Speak with your mother privately about the side effects and the possible outcome of Dad's stubbornness and see a Lawyer to help you take the steps needed to prevent the MDs from acting without your knowledge, perhaps without your consent. Get DPOA for both Mom and Dad health care, and possibly for financial when/if they are unable to act in their own stead. If you suspect your father is incapable of making RATIONAL medical decisions by himself call his doctor, arrange an appointment, and calmly explain to him that you will be seeing a lawyer and do not want your father treated without your and his wife's knowledge and consent until you do.
If NONE of the above works then time will take its course and you will be left to deal day by day with the outcome. I wish you so much luck and I hope you will keep us informed.
Anyway I did talk to the nurse today that comes to their home. She said that never once did she tell them that the cancer center is a scam, she was trying to encourage them to go for a consultation to see what their options are. And this nurse also agreed with you that probably no treatment is the best. My dad was talking about getting radiation treatments, I was panicking at that one, the nurse said she called the cancer center and urologist and there is no record of any kind of them telling him he needed radiation treatment, she has no idea where that came from, who called or what.
I also called the urologist this morning and found out I am on his hippa form so they did talk to me. He had a dr apt yesterday morning and would not let me take him. I asked him how it went and he said fine, it was fine. The nurse at the dr told me yes it went fine but he also had a scope done to check out his bladder to see if it had thickened. It has a little, but not much. I had no idea he was getting this procedure and I am sure he should not have driven himself
Yes something needs done soon, I really don't think they are capable of handling this. My mom has copd, and her health is not good either, she is in and out of the hospital every few months.
Thank you guys very much, for the suggestions and help, it makes me feel better that I am not crazy, getting there though.
Cancer treatment big money racket, don't do this - well, it's a point of view, and it wouldn't be the first time I'd heard it. But it *would* be the first time I'd heard it from a nursing professional, in her place of work, giving advice outside her clinical remit, unsolicited, to her patient.
I should ask the nurse what discussions, if any, she had with your parents before you lodge any complaints.
Maybe she will see the picture & be a great help & support to you all. Or maybe she won't. (When my sis did arrive, my hopes for practical help simply popped like bubbles in the wind - but at least I know now & have altered my expectations accordingly).
Very hard situation. I guess just check on them by phone & back off a bit? Gain their trust (if possible) but be ready to dial emergency services again. Maybe make an appointment with Mum & Dad's doctor to have your concerns noted - no POA so Dr cannot tell but can LISTEN. For a hospital stay be forthcoming with your concerns with Social Worker.
Good luck.
Now there seems to be a new problem, the urologist wants him to go to a cancer center. The cancer center called and wanted to make an apt for a consultation, go over options with them. I told them that I thought it was a good idea to go and see what they had to say. But they said that the home health nurse that comes and checks his vitals said that cancer treatments are a big money racket and he should not do this. Calls are going to be made tomorrow! I think the nurse overstepped her bounds
I'm wondering if we might need to add "accompanying elderly gentlemen to appointments about delicate subjects."
Any male relatives at all? Any peers of your father - friends, neighbours of roughly the same generation?
It's hard to tell - because evidently your parents don't care to be "interfered" with in general - whether your father has veered into this way of behaving because of the nature of his new diagnosis or because he's feeling overwhelmed about everything. But if you can think of a suitable male person to sit down with him and talk about what's going on and how he wants it handled, it might just be a start.
If there really isn't anyone, try going onto a prostate cancer website and consulting their forums.
How is your mother being about it now?
I'm sorry that you've got such a lot on your plate.
While it sounds as though both of your parents have some mental issues, this change in your dad sounds like a "change in mental status" that could signal a TIA, stroke, UTI or something else that needs to be investigated.
Frankly, if dad does not want you involved, you may need to wait until he fails spectacularly (falls, becomes seriously ill, etc., ) before you can get some help from a hospital discharge team. Very said when parents don't trust their children.
Don't feel bad if you step back for a breather.
Because you are becoming burned out, you need to contact your sister immediately and have a very honest discussion with her. Don’t let her put you off, make excuses. and tell you she “hopes” she can come up in a “few weeks”. You need help NOW. Since you are constantly being shut down by your parents, you need her help with then. Good luck. Come back and let us know how it’s going.