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  • Father with PNET (Pancreatic Neuroendrocrine cancer) -Need help!

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    Old 03-05-2019, 10:28 AM   #1
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    liz8100 HB User
    Father with PNET (Pancreatic Neuroendrocrine cancer) -Need help!


    This is very long. So sorry about that but I just have too much on my mind and would really, really appreciate any responses that could help.

    My dad was diagnosed with PNET last spring. Right now, it looks like he's reached near the end. He had a procedure a little over a couple weeks ago as a treatment and when he came home, he's never been the same. He's never been in the hospital once in his life. The procedure was supposed to be outpatient but they had to do it another way, requiring him a stay for one night in the hospital. He was dealing with it fairly well (except for the chemo pills, which gave him a hard time).

    Now that when he got home, he came home with a walker to help him with his balance and he was depressed because of the cancer and the hospital stay, which is completely understandable. I live with my parents now and I'm over 18 but due to physical challenges, I do what I can to help them while still living with them.

    Anyway, it was like suddenly things changed in one night! He left just to have an outpatient procedure and came back the next day with a walker and has been slowly getting more confused. This past week has been the worst. See, my mother can only do so much and she still works and has a tendency to not slow down with housework and doing things to get everything done. My biggest concern is that she will collapse and be unable to take care of herself and I can only do so much as well. Last year, she had a procedure because of her heart and blood pressure. So for the past year, it's been hard because of my dad's diagnosis and having to do more to help my mom so she isn't having heart-related symptoms again like she did in the early winter of 2017.

    So because I'm helping out my mom and doing anything I can do for my dad, it's been tough between giving my dad the attention he needs since he had the procedure the best I can, helping my mom take care of him, the house, decrease the stress for her as much as I can and taking care of myself, it's been a huge struggle for the both of us. Apparently, it takes more than just the two of us to take care of the three of us, the house and everything that needs to be done including errands and she's the only one who can drive. I've been reaching out to nearby family to help out when possible.

    Now that's just the background and leading up to my big point here so fast forward to the night before last. Like I said, my dad's been getting more and more confused. He gets confused about when he ate last, whether it's daytime or nighttime and he gets frustrated with the TV remote (which is not difficult at all if you don't press the wrong buttons) so we try to take charge of it so he doesn't keep calling my brother-in-law to help with the remote. My mom and I tried to help but my dad doesn't listen and prefers to listen to my brother in law so we just give him and let him call. He came over two nights in a row just to help get the TV back to the way it was until we finally decided we had to take control of the remote.

    My dad also likes to do a lot of trading online and he's done so for years now since he retired. Actually before he retired and he retired because he'd rather stay home and trade. He's been doing all of our bills, payment, financing etc.. all online. Last week, he got on and somehow messed up when no one was in the room with him and now he can't log in with his windows password. He didn't remember the password (he insists everyone helping him keep typing it in wrong). He's the only one who had the password in his head without writing it down. He had some personal info, passwords etc... on file for different things and luckily that was printed out but he didn't update his files so everything was correct. So we're screwed.

    So the night before last, we tried to help him get in his computer for the last time and he kept accusing us of putting in the wrong passwords, wrong info to get the right passwords. Because he kept putting in the wrong password and telling us the wrong things, we got locked out of the computer and was forced to verify his identity and without the right info, we can't.

    So after this happened for the last time, he got angry and decided to forget about it. He went to bed early and in the middle of the night, he somehow got himself out of bed. I have no idea how because he can barely get himself out with very little energy he has. He's all skin and bones now. My mom and are both deep sleepers so we heard nothing until the police showed up. Apparently, he got out of his bed, took his pants off, wandered around the house, dropping feces on the floor in different rooms and trashed one of the rooms and shredding the newspapers, tossing them everywhere. The room that he trashed is one one side of the house and we're on the other end of the house so we heard nothing. We didn't even hear him leave the house so he clearly was trying to get out quietly. He left the house, still naked from the waist down and started wandering around the neighborhood. He's not been diagnosed with dementia, Alzheimer's or any kind of mental impairments before he came home from the hospital almost 3 weeks ago and his cancer did spread.

    When he was out wandering in the middle of the night, he was very cold and it was raining hard so he was pretty wet. I don't know why a neighbor let his dog out in the rain but the dog was out and saw my dad and started barking like crazy, waking the neighbors. Someone called the police and an ambulance came because of his mental status at the time. One of the neighbors recognized him and knew where he lived so they came to the door in the middle of the night.

    Finally, my mom went with him to the ER. I stayed home and slept the whole night somehow. I've been so exhausted every day for nearly 3 weeks and suffering from depression, insomnia, muscle aching and severe emotional distress. When they got to the hospital, my dad started accusing my mom of abuse, hurting him, stealing his money and his stuff. NONE OF THIS IS TRUE! I've been around the house so much and never witnessed such a thing. The only thing is she does keep his wallet in her purse so he doesn't lose it and she DID tell him that! He knows or should've known that she was holding his wallet for safekeeping until he was back to where he was before the hospitalization. She took nothing else. I took nothing. Yes, we've taken his dirty clothes and put them in the laundry but we always put them back in his room where they were right in his drawers so he can get them again.

    My parents have been married for nearly 40 years and since he's been sick, she's been nothing but loving and caring to him. She asks if he wants his sweater, slippers, if he wants anything to eat or help to lay down in the bed so he can take a nap. All my life, she's been a workaholic but she has actually cut way back and worked only at home whenever possible (when my dad wasn't needing anything or yelling for something) and I'd step up and give him whatever he needed when he asked for it. We've been responsive so there's no reason for anyone to think he's been neglected. My mom has to help him into bed so she's there but it's not good because she's in her 60s and had heart issues last year, which could happen again. She could never slow down!

    A social worker at the hospital got involved because my dad was accusing my mom of abusing him, stealing his stuff and money only because no one could log in his windows account or fix the computer to get in and no one can do any of his payments or trading online. He has no scratches or bruises on his body. Only a couple of scabs from falls. He actually fell that night on the way to the hospital, giving him a scab on the leg. He's at the point he can barely use the walker now. My dad's always been obsessed with trading, money and insurances so I guess that's why what happened on his computer was the last straw and made him leave the house quietly without anyone knowing. No one else did them online and he had all the passwords either in his head or written down but the passwords on paper are wrong. All his paperwork is a mess so he never organized anything so that anyone can take over if anything happened to him. He just liked to take control and he's always been that way.

    My mom came home from the hospital in tears because of my dad's hurtful accusations. His own WIFE of nearly 40 years! I knew he was confused for a while but I never thought he'd do this. It's unthinkable! I thought he should've gone to the hospital sooner before this happened but my mom wanted him to be happy and he wasn't happy in the hospital before. I guess that's how marriage is. You do whatever it takes to make your spouse happy. We've been afraid to agitate him because that causes him so much stress and put him even closer to death. He's always been easily agitated and when he gets angry, he gets really angry! It's not just after the cancer diagnosis. He's always been that way and he just never wanted to get help. He got meds to calm him down but they don't work well enough, clearly.

    So now my dad's not talking to my mom and the hospital believes his accusations. No signs of abuse and they believe HIM??? What about our side? My sister's the only one he will talk to. I haven't been to the hospital myself and the way I'm feeling right now, I don't want go or see him. I'm just so angry with him. I know it's his cancer that's made him this way but I can't help it. I'm angry that he's never wanted to get help for his aggression issues for so long and his psychiartrist only gives him meds, not refer him to therapy or did more to help him. Because of his accusations, the hospital isn't calling us with updates and neither are any of his doctors even though they know my mom's been with him at every one of his appointments and trying to get information from them about treatments and so forth. They know she's been supportive. There was only one doctor who did call back after my mom left a message but that's it. That was yesterday. Today... nothing. We have no idea what they're doing to him, what they're going to do, when they're going to discharge him and where they're going to discharge him to. All I know is that he can't be discharged back home because we cannot help him around the clock. He needs that kind of constant care and it wasn't until yesterday morning when my mom finally gave in and accepted that we're beyond what he need at home.

    No one has called, not even a social worker which makes me believe the social worker still believes him and will continue to do so without getting our side. What about our story? Is this right? My sister decided to go back to the hospital to try and talk to the social worker and give her our statements and I don't know how well that's going to go. I'm here in pins and needles, worried that my mom's going to get accused of abuse only because of my dad's words though I'm sure that's not the law (in the USA) but without hearing anything from anyone, I have no idea what the hell is going to happen today, tomorrow or the next few days, weeks or months! Is this right for no one to call and try and get our stories? Why haven't they called? Are they ignoring us because they believe my dad or are they just busy? I'm not asking because I want my dad back home so my mom can "abuse" him or whatever the hell he thinks she's doing. There's been signs of mental impairments and it feels like the hospital believes him and they're going to do nothing but keep accusing my mother and break up their marriage. They have been married this long and all these years, there has been nothing but love and care but apparently, he didn't trust her or anyone with money so he took care of everything himself! Is that what marriage is really supposed to be about? I didn't think so! My mother's never been careless with money at all and we've always been financially well.

    Anyway, I don't know what to think. I don't know what's going on or what's going to happen because the hospital refuse to update any of us. How could they believe him when he went out wandering with his pants off in the rain in the middle of the night, crapping and trashing in our house, when there's no signs of abuse on his body and no signs of malnutrition and when most of his bloodwork has been normal except a few issues that could've caused his mental impairment due to the cancer and when NO ONE has had any complaints (except him) about how he's being treated? How can my mother be accused of stealing money when she has no access online to it and everything financial is online! No correct passwords or anything and all those years, she's been letting him take care of things, trusting him. Maybe that's the problem. A nurse stops by every week about twice a week and sees how well he's been treated at home. No complaints. No complaints from a nurse or physical therapist at all about how he's being treated at home. So because we're screwed and unable to access anything online, we have to figure out everything ourselves on this computer I'm using now. My dad couldn't even use this computer because he already messed up the other computer. My mom only uses her own laptop she uses at work. She never uses either computers in the house and I've been by her side almost every minute so I can do what I can to help so she doesn't have a heart attack!

    Sorry this is very long.

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    Old 03-05-2019, 06:28 PM   #2
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    Unhappy Re: Father with PNET (Pancreatic Neuroendrocrine cancer) -Need help!

    Dear liz,

    Everything you each feel is completely normal!
    It's all so sudden and shocking. But you will all get through this.
    It is no body's fault. I'm sure your dad would have made better arrangements had he known to do so.
    But that didn't happen, and there are ways around it.

    For one thing, a good computer technician can access what is on the computer, and likely your mom has to assert her marital rights, first seeking legal counsel to find out what her rights are. There are usually attorneys that may provide some free feedback, and you can do some internet searches regarding 'marital rights to accounts finances" and phrases or words such as those.

    Depending on where you live wives may have legal rights to accounts, etc. even if her name isn't on an account. In my country and state, both marriage partners have every right to and obligation for whatever each one owes or owns. Your mother needs to seek legal aid to find out, though, as soon as possible.

    The medical profession can only safeguard your father from his wife until she asserts whatever legal rights that she has. So, you can do some online research to find out what has to be done in that regard.

    I know this is a horrible thing to go through. My husband and I have separate accounts but already set up legal directives for each other so we can legally take care of business if one of us is incapacitated. Your dad probably thought he was helping by taking care of everything himself and never thought any of this would happen, and probably none of you suspected it would. Unfortunately people often don't want to consider the worst case scenario so they fail to make appropriate arrangements just in case.

    You all can get through this. But I am sorry you have so much heart break. and you are completely normal to feel so angry.
    ~ YaYa ~

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