I have reason to believe that my stepmother may be manipulating my father's health problems.

September 23, 2007 7:20 AM

I have reason to believe that my stepmother may be manipulating my father's health problems. Looking for advice on how to handle this delicate situation.

(Posting for a friend. Thanks, zharptitsa)

About 6 years ago my father was diagnosed with Parkinson's Disease (although this diagnosis is in question...more below). I live quite far away from my father so my ability to monitor his condition has been limited. After 20+ years of being with my stepmother, my father has become very submissive to her dominating personality and she has always made most of the decisions. The passive, obsessive compulsive, depressive personality of my father has led me to believe that these may be factors in his worsening health condition. Another factor that I cannot seem to understand is my father's fear of my stepmother. Although she seems to care and obviously does by all the action she has taken in the past 6 years to try to find out what is truly going on with my father, he fears making any decision against her will and has lost any voice or opinion that he may have had in the past. This may be part of the disease, but she may also have been playing a part of controlling my father and keeping him from knowing what has been going on with his health.

For the past 6 years, my father has been taking Sinemet, a common Parkinson's medication. In turn, this medication has caused brain damage and my father suffers constantly from hallucinations, confusion and panic attacks. Recently, a neurologist diagnosed my father with an illness called Lewy Body--not Parkinson's at all! There is a lot of confusion about my fathers condition, but I feel that my stepmom has not told my father the whole story about what is going on with him and that she has withheld information from me and other members of his family. She is a doctor and has decided to speak with doctors about my father's condition without my father there, leaving my father completely clueless as to what is going on.

In addition, on top of his illness, from years of being a serious athlete, he has severe back problems and is constantly in a lot of pain. According to my stepmother, he may be getting back surgery in the near future which could possibly cause brain damage due to the long time under anesthesia. It is still not definite whether or not he will be getting this surgery. I recently learned though (from a relative who spoke directly with my father) that my father thinks he would be getting some sort of brain surgery. Now I don't know if my stepmother is lying to me about the back surgery or if my father is just confused. I am getting many different stories and I don't know who to believe.

My father is so afraid of her that he doesn't say much to me when I'm on the phone with him. I don't trust her fully, but I also don't think she would do something so malicious. I want to find out what's really going on and talk to his doctors but I haven't been able to get this information from my stepmother, which leads me to further distrust her.

posted by zharptitsa to health & fitness (15 comments total)

i'm sorry for the situation--it sounds bad--but what is the question?

it sounds to me like you have a longstanding bad blood with your stepmother, which is making it hard for you to entrust your father to her care now. a misdiagnosis of a neurological condition isn't necessarily malicious, though. are you afraid she is abusing him? if he is cognitively impaired, it seems entirely possible that she has explained it to him, but that he hasn't been able to absorb it.

the only thing i can think of is that a visit home is in order. go with your dad to his doctors and get the information directly from them.
posted by thinkingwoman at 7:59 AM on September 23, 2007

Even assuming your mother has nothing but the best of intentions, why on earth is she talking to other doctors to get diagnoses without him there?! And maybe she just doesn't have the heart to tell him what's going on, but the fact that she's a doctor again makes this somewhat inexcusable.

Could you (and any siblings?) fly in for a visit and find an excuse to take just your dad out to lunch or something, to have a heart-to-heart talk?

As an aside, if your father was diagnosed with Parkinson's, suffered brain damage because of the medication, and then turned out not to have Parkinson's, it sounds like you may have grounds for a malpractice trial? IANAL and IANAD, of course. If nothing else, this gives you an opener to talk to your stepmom about his true condition. (And talk to just her, when your dad's not around, so she won't have as much incentive to cover anything up.)

I'd like to believe that it's well-intentioned, and that she's just trying to protect your father from the truth. But this whole situation seems rather strange to me.
posted by fogster at 8:04 AM on September 23, 2007

I think all you can do is start making a lot more trips to see your father. You really have no idea what is going on here. It could simply be that your stepmother doesn't particularly like you and hasn't bothered to keep you in the loop, which does not mean that anything bad is necessarily going on.

After 6 years she may resent you because she's stuck taking care of your father 24/7 and you are not there in any sort of constant way to help out. I'm not saying this is your fault, but it may explain all this second hand information you are getting.

I think you need to start taking an active role in your father's care and that means a lot more than just making a lot of phone calls. I don't know how feasible that is for you, but that's the only solution I see to getting to the bottom of what is really going on.
posted by whoaali at 8:15 AM on September 23, 2007

This is actually zharptitsa, not the OP (who is a friend of mine). Because of the first comment, I just wanted to clarify the question a bit. Primarily, the OP is looking for advice about how to move forward -- particularly from others who may have been in similar situation. Although not discussed in detail above, there is reason to believe that some form of abuse MAY be going on. However, she doesn't have anything that would be considered proof and doesn't feel ready to call social services/police if and when it ever comes to that (hopefully not). [NB: The father and stepmother are in Canada, if that makes a difference.]

Also (and here's a more tangible question), she really wants to know if there's any way to get hold of her father's medical information from afar. This back (brain?) surgery may happen next week. This does not give her enough time to go home and probe the situation further. Aside from showing up on the doorstep of the hospital the day of the surgery, is there anything she can do now? Comments from anyone with experience in Canadian medical privacy laws would be welcome. Although the surgery would actually be happening in the U.S., which makes things more complicated. Thanks all.
posted by zharptitsa at 8:16 AM on September 23, 2007

I've been in a vaguely similar situation, although not quite and not in Canada. It was never really resolved, because unfortunately the spouse basically holds all the cards and unless you are willing (or even can) take things to the next level, legally, police, etc, there is amazingly little you can do. The only way we were able to get information was to sweet talk the nurses at the hospital, but it doesn't sound like the OP's father is in a hospital right now or to get in with someone close to the couple to basically be your spy. If you make it sound like its more a family dispute (not that you think its abuse) and that you simply aren't talking for some trivial reason, someone close to them might have mercy on you and start stopping by a lot and reporting back to you.

Alternatively, you can kiss the stepmother's ass. My grandmother did this amazingly well with the abuser in my case. Show a ton of sympathy for what she's gone through, just pile it on thick. I mean ultimately it'll be luck and charm. At least that was our experience, there may be legal options available in Canada. The OP may want to call up someone at the hospital and just straight out ask if this sort of information is available to you or if the dr's would talk to you. If you let them know that you and your stepmother are having issues and you are really just worried and want info, they may not pass on that you called to your stepmother, but this could also backfire big time. Personally I'd be booking my plane tickets.
posted by whoaali at 8:47 AM on September 23, 2007

I don't have any answers to the domestic portion of your question, but some things that might be useful:

First, Lewy body is a very difficult disease to diagnose, because its symptoms initially look very similar to Parkinson's or other senile dementia. The only 100% objective test for Lewy body requires an autopsy, so misdiagnosing Lewy body as Parkinson's isn't surprising.

Second, hallucinations are a common side effect of sinemet and also are a symptom of Lewy body. What leads you to believe that the sinemet has caused brain damage?

Third: I don't think brain surgery can help with Lewy body, so it would be surprising your father was going in for that.

Finally, if your father does have Lewy body, then you cannot trust him as a primary source of information-- it greatly reduces one's cognitive ability and many suffer from hallucinations or delusions.
posted by justkevin at 8:49 AM on September 23, 2007

For these purposes, I don't think the Canadian medical/privacy issues are substantially different from the US.

Is there a way the OP could phone the doctor, and arrange for a phone consult to clarify the issues? (I've never done it with a hospital, but I have done phone consult with MDs and other professionals here in Canada).

Another possibility is that all Canadian hospitals have some sort of a chaplain. The OP could call the chaplain and explain her fear for father's well being given that he's having surgery, complicated health issues, and drug reactions (but nothing about the MIL's issues), and that this is intensified by her being so far away and the father's inability to communicate directly to her about his health issues. While you can't expect the Chaplain to run political interference, perhaps a sympathetic ear by someone who may (or may not) have local knowledge or means of support to find other ways to move forward might be useful.
posted by kch at 8:55 AM on September 23, 2007

she really wants to know if there's any way to get hold of her father's medical information from afar

IANAL, but I'm pretty sure the answer is no. Medical records are confidential.

I'm a bit unclear, but it seems that your friend is calling into question her father's consent to surgery- is that right? If that's the case, she needs to get a lawyer and be prepared for a long, ugly fight.

This back (brain?) surgery may happen next week. This does not give her enough time to go home and probe the situation further.

If she's that concerned, then that's enough time.
posted by mkultra at 8:56 AM on September 23, 2007

coming back with another thought: the hospital should have an ombudsman and/or patient services representative who might be able to give her some guidance.
posted by thinkingwoman at 10:02 AM on September 23, 2007

Seconding mkultra's last point. It sounds to me like your friend's hands are pretty much tied as long as she's afar.

Medical records are quite confidential, but I'm not sure you should give up that easily. If you call the hospital and explain that you're [your father]'s child, a world away, and that he called you and mentioned he's going in for brain surgery and is somewhat mentally impaired, and you really need to know what's going on, there's a chance they'd be persuaded to give you some information. I think the key is in demonstrating to them that he's your father and that he's (at least temporarily) of diminished mental capacity. I can't say what they'll reveal: they probably shouldn't say anything, but you might get something sympathetic. IMHO, as his child, with his best interest at heart, it's entirely 'right' for you to be calling.

I know you probably don't want to fly out there, but it's probably your best option unless you can work some magically remotely.
posted by fogster at 10:03 AM on September 23, 2007

I have dealt with my share of step-parent issues, and I can easily believe that even if the stepmother isn't malicious, she might just be incapable of managing her husband's care appropriately. Combine that with a tendency to be controlling or to be easily put on the defensive, and you've got problems. It sounds like the father is actively suffering, and the daughter is trying to figure out a way to get involved without being inconvenienced. Unfortunately, that's not going to work.

If she wants to make an impact, the daughter has to get involved, and that means being on site at least some of the time. She has to take her father to doctor visits and make it clear she is a first-degree relative involved in her father's care. And she needs to back that up by participating in the care.
posted by caitlinb at 10:39 AM on September 23, 2007

Whether the OP's father has Lewy Body dementia or Parkinson's disease is a bit of hair splitting. Both cause progressive, irreversible cognitive impairment, and as such it's very hard to make much any sense of what information the OP has gathered from 2nd and 3rd hand sources, and it's unclear if her own father is even capable of providing adequate details at this point. It's unlikely that Sinemet or any medication he's taking "caused brain damage" though they can cause hallucinations, and it's far more likely that that is simply the progression of his disease, but again, that's now based on 4th hand information. It sounds like the OP's father might have fairly advanced dementia, so I find it odd that anybody is contemplating any type of surgery at this point, but again, that casts further doubt on the bits of info we've been provided.

You don't go into much detail on the OP's relationship with her step mother and that's crucial given the circumstances. I don't know how Canadian privacy laws differ but if this were going on in the US, it sounds as though the OP's step mother has durable power of attorney and it would be near impossible to get access to medical records without either her consent, or the consent of her father following an assessment of his capacity/competence, or a court battle. So knowing what the deal is between the stepmother and the OP is kind of imperative here.
posted by drpynchon at 12:00 PM on September 23, 2007

A dear relative of mine had Lewy Body Dementia. At first, he was diagnosed as having Parkinson's; the Lewy Body diagnosis came after a while, when it became clear his condition was deteriorating extremely fast. Parkinson's Disease with Dementia and Lewy Body Dementia are actually two names for the same thing. Everything you've described about your father's current health, mental and physical, closely matches what happened with my relative. People who talked with his neurologist had the impression that the tentativeness, inability to speak, confusion, bad dreams, and fear were all to be expected in someone with PDD and taking levodopa.

It must be terribly troubling for you to be dealing with this from afar. You need to find out all you can about what is tpical for people with Parkinsons, Lewy Body, and Sinemet so you can separate what's normal and real from what might be questionable. Can you go and visit your father, and then talk with a neurologist? It doesn't have to be the same neurologist whos been treating him, if for some reason you don't trust that particular doctor.

The wife of my relative did keep quite a few things from him. That caused a lot of discord in the family, but she didn't do it to further her own ends -- she just thought it was the right thing to do.

I'm sorry that your relationship with your stepmother is such that you're so suspicious. There's very little you can do to keep her from managing his illness as she chooses too, especially if his condition is fairly normal within the realm of similar patients. See if you can make peace with her in order to have contact with your dad while he still knows who you are.
posted by wryly at 4:05 PM on September 23, 2007

I highly suggest that your friend contact either the patient care advocate or social worker division at the hospital where her father plans on having his surgery performed. Another angle she may consider is to consult with an Elder Care attorney. I know that here in the state there are Elder Care Agencies run by each State, where you can call for references. I honestly am not familiar with the infrastructure of Canada, but I suspect they will have something similar.

I agree with the previous posters that your friend really needs to bite the bullet and drop whatever she's doing to get to her father's side if it's even *remotely* possible. I don't mean to be harsh, but, Christ, it's her father. And if he's having potentially unnecessary brain surgery (!) at the hands of his second wife, well, then, I would think that kind of qualifies as a holy shit moment and you get on a plane pronto, kwim? JMO.
posted by dancinglamb at 6:32 PM on September 23, 2007

Can friend talk to the ombudsperson to discuss a possible Münchhausen's' syndrome by proxy situation? This is what I'm inferring.
posted by brujita at 10:31 PM on September 23, 2007