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I don't know how I feel about this


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My mom was diagnosed with brain cancer after a seizure about 2 years ago. Thankfully, she's doing pretty well at this point. She went to a different neurologist on Tuesday because she's been wanting to stop her seizure medication and the other neuro wouldn't let her. This one agreed to give her a try at stopping it. She's only ever had the one seizure and all her scans (MRI and EKG) look good. The dr asked her to limit her driving for 6 months. She called to tell me she would be able to stop and wanted my brother and SIL to think about whether they wanted to let mom drive their dd to the bible study they've been going to.

 

Well, mom calls this morning to "confess" that she's actually weaned herself WAY down from the med starting in June. So all the grandkids have been riding in the car with her without their parents knowing she wasn't taking her full meds. I know there's nothing to be done to change the situation at this point but I really feel I've lost a lot of trust in my mother. How can I trust that she's going to tell us the truth about this situation? What if she starts having small seizures and doesn't tell anyone because she doesn't want to go back on the meds?

 

I'm just frustrated with this whole thing! I talked with my dad a bit ago and he knew she's started weaning but didn't feel it was his place to tell anyone. :mad: Not his place to protect his grandkids? Whatever.

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It's actually worse than you have even thought. She could start having small seizures and not even realized it. That's much more common than you might think.

 

This is a tough situation, but it seems to me that your duty is clear. I know it's hard, though. :grouphug:

 

:iagree::grouphug::grouphug:

 

You have to draw this line, but don't be too hard on her. She wants to be okay. It's so very, very hard to be sick when you cannot see the illness clearly.

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I already had this conversation with her last summer. She made a friend during her radiation treatments who didn't make it very long. I was going to take her to the funeral. (I wanted to go too. The daughter and I had become friends.) She wanted to take her car. I said fine, I'd drive her van. She went ballistic on me and said "I'M DRIVING MY OWN CAR." I had to tell her dh and I weren't comfortable with her driving the kids (some of them were going with us.) She got very upset and ended up not going to the funeral.

 

She hasn't been on any treatment for almost a year and has been doing really well. She's still very with it mentally (more so than a lot of other people) but not quite what she was. She's wanted to come off this med because of the fatigue it causes. She's had several EKGs done that show no seizure activity. I'm fine with her trying this if that's what she wants. I'm NOT fine with her making this decision without full disclosure to her kids and still driving with the grandkids.

 

She's very stubborn and has wanted to do things her way from the beginning. She's told my dad he can't talk at her dr appts or she won't let him go. She tried to do that with me, but I told her I wouldn't do it. If I had questions or concerns, I was going to voice them. (She didn't have much choice at the time. She couldn't drive herself.)

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I've lost a lot of trust in my mother. How can I trust that she's going to tell us the truth about this situation?

 

You can't trust that she will tell you the truth. My mom also lied about a situation that put our whole extended family at risk, she still doesn't see it as much of an issue. Your mom probably doesn't see what she did as wrong either. I don't know how to fix it, we haven't fixed our problem yet either. If your mom is anything like mine... you can have a relationship with her, but don't let her make any decisions about anything and get your own information (what she tells you will be in her best interest not the whole truth.)

 

I'm sorry that she is not doing her job as a grandmother, she is not supposed to make the decisions... you are.

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She's very stubborn and has wanted to do things her way from the beginning. She's told my dad he can't talk at her dr appts or she won't let him go. She tried to do that with me, but I told her I wouldn't do it. If I had questions or concerns, I was going to voice them. (She didn't have much choice at the time. She couldn't drive herself.)

 

She wants her dignity and control.

 

I am SURE that there is a middle path that gives her those.

 

If I were you, I would go along with her on the 'talking to the doctor' issue. She has a right to control that appointment as she is the patient. Then nicely tell her afterwards that you had a few more questions to ask, tell her what they were and why them seem important, and ask her permission to talk with her doctor. Once she sees how genuinely helpful this is, she will probably appreciate it.

 

But don't let her drive your kids around ever.

 

That's the way I see it.

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It's actually worse than you have even thought. She could start having small seizures and not even realize it. That's much more common than you might think.

 

This is a tough situation, but it seems to me that your duty is clear. I know it's hard, though. :grouphug:

 

:iagree: Your mother has acted very irresponsibly in respect to the safety of others. :(

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:iagree:

She wants her dignity and control.

 

I am SURE that there is a middle path that gives her those.

 

If I were you, I would go along with her on the 'talking to the doctor' issue. She has a right to control that appointment as she is the patient. Then nicely tell her afterwards that you had a few more questions to ask, tell her what they were and why them seem important, and ask her permission to talk with her doctor. Once she sees how genuinely helpful this is, she will probably appreciate it.

 

But don't let her drive your kids around ever.

 

That's the way I see it.

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She wants her dignity and control.

 

I am SURE that there is a middle path that gives her those.

 

If I were you, I would go along with her on the 'talking to the doctor' issue. She has a right to control that appointment as she is the patient. Then nicely tell her afterwards that you had a few more questions to ask, tell her what they were and why them seem important, and ask her permission to talk with her doctor. Once she sees how genuinely helpful this is, she will probably appreciate it.

 

But don't let her drive your kids around ever.

 

That's the way I see it.

 

LOL!! You obviously don't know my mother! I know she's the patient, but she's the patient with a BRAIN TUMOR. She doesn't think clearly on a lot of things. As her caregivers, my dad and I have a right to ask questions of the drs. How can we give quality care if our questions aren't answered? She's refusing to see the drs as often as they want to see her. Visits would be about 6mths apart at this point. That's too long to bring up questions AFTER a visit and wait till the next one.

 

I know she's wanting to retain some dignity and independence. I know this. But at what cost? If it only affected her, she could do whatever she wanted. One thing she always told me growing up was that the decisions and choices we make don't only affect us. They affect those we love as well. Now she's not living by those words herself.

 

I'm not sure which makes me more upset. That she did this or that my dad knew and said nothing.

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LOL!! You obviously don't know my mother! I know she's the patient, but she's the patient with a BRAIN TUMOR. She doesn't think clearly on a lot of things. As her caregivers, my dad and I have a right to ask questions of the drs. How can we give quality care if our questions aren't answered? She's refusing to see the drs as often as they want to see her. Visits would be about 6mths apart at this point. That's too long to bring up questions AFTER a visit and wait till the next one.

 

I know she's wanting to retain some dignity and independence. I know this. But at what cost? If it only affected her, she could do whatever she wanted. One thing she always told me growing up was that the decisions and choices we make don't only affect us. They affect those we love as well. Now she's not living by those words herself.

 

I'm not sure which makes me more upset. That she did this or that my dad knew and said nothing.

 

:grouphug:

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Many states have requirements of limited driving after seizures. Is her doctor telling her not to drive for 6 months because of a state requirement? I wouldn't be worried just about your children riding with her or your mom's safety, but all the other people on the road and pedestrians too! If she drove and had a seizure resulting in injury to others, she could be financially liable. I'm sure she would also be emotionally devastated if that happened!

 

Mary

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I don't think it's necessarily because of a state requirement. She had a seizure in Oct 09 and couldn't drive for 6mths after that. Technically you have to be seizure free for 6mths. Well that's long past. She's stopping her seizure medication and the dr said to limit her driving for the next 6mths. No highway driving.

 

I know it's not just about my kids, but I would think her own grandchildren would stop and give her pause as to the safety of what she's doing. Right now she has a drs ok to stop the meds so she wouldn't be held any more liable than the next person.

 

I knew she was going to the dr to ask about stopping the meds. I *didn't* know she'd already started the weaning process on her own. I should have been given that information if my kids were going to be alone with her for any reason.

 

I know she would be VERY devastated if something happen. She just doesn't think anything is going to happen.

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I've been through some of this with my own Dad. I had to stop allowing him to drive my children. It was soooo hard. I told my Mom first and then sort of let her help me.

 

I agree that her doctor's appointments are hers. She shouldn't have to allow you in the room, and if she does, the "you can't talk" rule seems fine to me if that's what she really wants. It doesn't seem fair to use the fact that you are giving her a ride as leverage to get to participate in her doctor's appointment, even though I totally understand why you want to ask questions and voice concerns.

 

It's so hard and you have my full sympathy. I don't even like thinking about how hard some of that stuff was. But ultimately I think you have to treat your parents as adults as long and in as many ways as you possible can. Driving your kids is NOT one of those ways. Being silent during her appointments is. I might slip a note to the doctor with any observations I think he needs, though. If you think she's not giving in a full report on some of her symptoms (like if you think she's having difficulty with daily tasks and then lying about it) I would make sure I got that information to him on the sly.

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