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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.

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Your parents sound like very proud and independent people who don’t want help from anyone. It seems like every time you try to help they react with anger and you are verbally abused by them. There may be some dementia involved with both of them. Does anyone have Durable Power of Attorney for them? This means that when and if they are unable to make decisions for themselves, financial or health-wise, the POA can step in and make those decisions. There is also a form called “HIPPA” which, if your father and mother listed you and/or your sister on this form, the doctor can tell you what is going on with them medically. But, based on what you wrote, they probably haven’t listed you on the forms which is a shame. You can write a letter or call the doctor and explain what you’re going through with them and without asking for any privileged information, as them for help.

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.
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Can you ask your Dad how he plans to get to the doctor appointment on Tuesday? Maybe you could fib and tell him the doctor says he needs a driver for these appointments. If he’s receiving radiation, it’s probably not a fib. When/if you get to the office, ask the receptionist to give him a Hippa form “so they have another contact.” It may be more convincing if it’s presented to him in a direct manner by the office, not you.
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Cindy1123 Jun 2019
Good idea. I had not thought of that
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Thank you for your help, I am calling the dr tomorrow. No there is no power of attorney, nothing. They don't trust anyone for that
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Yes, call the doctor and let her/him know what is going on with your dad.

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.
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You know how young ladies nowadays say: "you need men for three things: high up things, heavy things, and hugs"?

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.
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I would contact the SW with your local Areawide Aging Agency ( contact DHS and they can guide you in finding this, also) and ask for further help from them.  Also, I would tell my sibling that it can't wait a couple of weeks.  She needs to come now and help you.  I would also contact an attorney who deals in Eldercare/Family Law and see if you can get a POA and begin the legal steps NOW.  With both you and your sister on board with the legal angle, it will be a first step for you.  It will gradually begin to fall in place, but it is a very difficult path.  Find a support group and join NOW.  Research for potential placement places so that you can have that info for later on.
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Thank you everyone for the input and lots of ideas to think on. My dad did take himself to the dr Tuesday, but at least it is only a couple of miles away
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
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CIndy, I would wonder if that's what the nurse actually said, or if that is what your parents "think" she said. I would tread very carefully.
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Jannner Jul 2019
Yes, according to my mother, the dr. said my stepfather ( moderate to severe Alzheimer’s, could not remember how to raise his window in the car or fasten his seat belt) was “Fine to drive, just not on the freeway”. And he only had” a little memory loss” not full blown dementia.🙄🙄🙄
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Re your sister: She “hopes” she can come up in a “few weeks”. I also have a sister like this. Urrggg.

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.
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Isthisrealyreal Jul 2019
Actually Beatty, being on a HIPPA release allows the doctor to talk with her about everything, she just can't make any decisions. I just wanted to clarify that so that individuals that don't have POA know that they can talk to the doctor. It is a beneficial thing to have and we should all have them for our loved ones and they should specifically state that they don't expire and are intended to be valid wherever presented.
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Hi Cindy, sorry you have so much on your plate. I agree that the subject matter of prostate might be the issue with your Dad not willing to include you in the topic. A male figure as suggested already might help. Maybe a male social worker could be contacted for guidance? I do know a bit about prostate cancer treatment as I have frequented another great forum “Inspire” for info for a friend. The 4 month shot sounds like ADT treatment which you can google. The treatment does come with side effects that for some men are quite difficult to deal with such as major depression and hot flashes. I’d be concerned if this was communicated or understood by your Dad. Also of concern would be if the cancer needs treatment at all at his age. Lots of over treatment being done in this field. Maybe that is what the nurse meant if she mentioned something to him. Again, sorry and hope this helps as you somehow need to find a way to get involved and get your sister to get involved to help them in my opinion. Best of luck.
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Cindy1123 Jul 2019
Nope won't work with him, he believes in keeping things private. I agree, a lot of over treatment and sometimes the treatment is worse then the disease
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Cindy, I've got lots of ????????????? appearing over my head, too, about what the nurse actually said to your parents.

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.
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Cindy1123 Jul 2019
Talked to the nurse this morning and she said in no way she ever said anything like this, yes it raised a lot of red flags for me to. My mom has made up stories like this before, so I have to learn when something doesn't sound right, it probably isn't. One time, my mom had severe pain in her shoulder, I could not take her to the dr that day. She told me her arm was out of socket, and I remember thinking that is odd. A couple of months later she was in the er, telling the dr she had calcium deposits on her shoulder. I asked her why she told me it was out of socket and she said that sounded like it hurt worse then calcium deposits. Really I have got to question her more about things
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Could it be your father is in denial about having cancer? Just the word terrifies some people. Could it be he doesn’t want you to worry or simply can’t accept the diagnosis?
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Cindy1123 Jul 2019
it could be the word cancer is scaring him, heck it scares me. I don't know what he is thinking, he won't talk about it.
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YIKES! PULL the EMERGENCY CORD! I am VERY concerned here. If your father is not having problems with urination, the treatment of Prostate Cancer in a man this elderly can cause many more problems than he went in with, including constant urine leaking and incontinence. My Dad's doctor told him that "this isn't what will kill you; prostate cancers aged onset are almost always slow growing" and my Dad was never treated. Lived 8 more years and died of heart problems.
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.
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Cindy1123 Jul 2019
there is no talking to either parent they say they know what they are doing. Did I mention that I did try to talk to my mom about getting poa for medical, at that point I was told to get out of the house or the cops would be called. I am not sure if they have dementia, they have always been this way. Sometimes I think they do, things are more off the wall then they used to be
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.
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@Cindy1123 We went through some similar issues with my in-laws. Are your parents diagnosed with Dementia, Alzheimer’s or mental health issues? I don’t know that I saw that in your profile or in this thread. If they are not, it might be harder for you to be able to assert any POA or medical interventions. At this point, unfortunately, you can’t force them to give you information and you can’t exert any POA issues. We went to an elder care attorney and got all that paperwork done, with their blessing, and when it came time to sign, they refused and accused us of trying to throw them away. My husband implored then, tried to explain that it was ultimately for their protection, etc, and they wouldn’t budge. Said they had consulted their own legal advice (- nosy neighbor) and she advised them not to sign. Fortunately they go to our long time doctor who knew what was going on and got them to sign the Hippa documents for us. Generally we would communicate with the doctor by writing him a letter, and he was be very good about addressing our concerns with them. They have dementia and it is becoming advanced quickly. Long story short, as health crisis’ intensified, we were able to get all the paperwork done.

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.
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Cindy1123 Jul 2019
I did find out I was on the hippa for the urologist, so I did talk to the nurse. He did have a procedure done, a scope to check his bladder. He never said a word to anyone that this was being done.
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
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Strictly my opinion but I would not put any 87 year old through radiation or any kind of cancer treatment.
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Cindy1123 Jul 2019
the nurse told me the the other day that she didn't know where he got the idea he was getting radiation treatments. The apt for the cancer center was a consultation, that is it, and I agree, with a man of his age the treatment is worse then the disease. I think what a lot of the problem is, he can't hear well, and if he doesn't understand, he won't ask questions. Also he won't let anyone go into the dr with him to ask questions, he says he can handle it himself
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NO. NO. NO. He doesn't get to be in control as he's not even of lucid mind! Take control now.
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Cindy1123 Jul 2019
You are right, and I think the nurse that comes to the house is seeing it. She can talk to him before he will talk to me
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Cindy, take comfort.

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.
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Cindy1123 Jul 2019
Thank you, my husband tells me this all the time, my sister lives in another state and I am not sure she believes what I tell her is going on.
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Cindy, hugs! What a rough situation, responsibility without authority, thankfully you are on the HIPPA release. Helpful.

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.
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Cindy1123 Jul 2019
the nurse that comes in and checks his vitals told me she is going to try and talk them into giving me medical poa. Today my mom called me and said she is going to get an apt at the cancer center, and would I take them. I told her yes, this is just giving them options, they don't have to do anything. I would never do anything that would be against their wishes, the only thing is, I don't know what their wishes are. You really can't sit down and have a sensible conversation with them about this without them getting angry. Thank you for your advice. It does help a lot
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Cindy, sometimes we can only ask questions to find out what they want. Kinda in passing, so dad, this cancer thing, do you want full effort or just let you go kinda treatment. No conversation just a question thrown in now and again.

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.
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Cindy1123 Jul 2019
I doubt he will give me any answers like that, he will not talk about anything like that. The nurse will probably be able to get more answers out of him. He likes the nurse, so will talk to her. I truly believe the only reason I am on his hippa for the urologist is because I was there with him and he does not understand what hippa is.
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It’s difficult for sure. If he does have dementia, my stepfather died due to a UTI that spiraled him from moderate to severe to end stage Alzheimer’s within a few days . His prostate was so enlarged he couldn’t urinate at all but due to his Alzheimer’s he didn’t understand ( my mother refused to accept he had Alzheimer’s so pretended all was well. She didn’t monitor anything he did. ) It sounds like your father is with it enough to realize that but something to keep an eye out for.
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Cindy1123 Jul 2019
i don't either one want to admit this is going on, my mom is pretending everything is fine. She said one day she couldn't wait until this was all over and they are both convinced that the cancer center is a money making scheme, their words not mine. My mom says my dad is feeling fine so what is the problem. I have a feeling we are going to continue this way until something else happens
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Cindy, I would make his nurse my new best friend. She can help you understand what you will be required to do if and when the time comes.

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.
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Cindy1123 Jul 2019
I have gotten off the train, I haven't called or went over for a couple of days. I am done, but I will be there if they need me, if that makes sense
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Cindy, I am so glad you "got off the train". There really is nothing you can do for these two. And they don't want any help or input. Let it up to them now, and to the nurse who is there, and the doctors. They will go ahead with the care and treatment they decide together. It is better to just stay out of it and let it take its course now. You tried; did all you could. It will be nothing but added frustration to all now to continue. I wish you such good luck and hope you will update periodically, tell us how this is working for you.
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Cindy1123 Jul 2019
I will still be taking them to some dr apts., mostly the ones that are in high traffic areas, I plan on sitting in the waiting room and reading a book while they are in there. I feel they truly need something I will be there thank you for your kind words. It has helped and made me realize I am not crazy
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Cindy, backing away is a very wise move on your part.

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.
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Cindy1123 Jul 2019
I will still take them to dr apts and go to the store, but I am not going to be available when my mom calls and wants me to go to the store or take her someplace right now. I can't cut them off completely, I am the only one to help them. It it is going to be on my terms
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