Doctors and terminology. Am I too sensitive?

This is all about fear, stigma and misunderstanding. Actually, scratch misunderstanding: it's about partial understanding, and only seeing the terrifying bits.

OCD I'm interested that you write that you don't want people to mention dementia *because* you (very properly) want your mother treated with the utmost respect. Did you intend to imply that it is only to be expected that people suffering from dementia will not be granted that respect? Would you not see that as a problem in itself? I'd rather we were all campaigning vociferously for people with dementia to be treated with as much dam' respect as anybody else.

Still, I understand your apprehension. And I can understand that, if your mother is frightened by the term, you don't want it shoved in her face. But a couple of things worry me.

The first is that you're going to find it difficult, if not impossible, to prevent your mother ever hearing the word. People are going to refer to it: not only doctors, especially those called in for consultation, but also nursing staff, technicians, other patients and their relatives. What can you do about it? Wear a t-shirt emblazoned with "We Don't Mention The D Word!"? Wouldn't it better, and in the long run a safer bet, to accustom her to it and get rid of as much of the fear and stigma as possible in the process?

The other is your being fine with your mother hearing that she has 'severe memory loss.' The reason that this worries me is not that it's euphemistic, but that it's inaccurate. Some parts of your mother's memory may be fine: how can she agree that it's severe when she can recall every detail of her wedding dress, for example? And how will that help her to understand why other parts of her brain - her spatial skills maybe, or sudden feelings of anger that she never used to experience, that kind of thing - aren't obeying her any more?

I can remember how indignant I felt the first time a medic stated it factually that my mother should be investigated for vascular dementia. I didn't actually say "How dare you Sir!" but that was how I felt. I'm not sure why it felt as though he was insulting her. I calmed down pretty quickly and thought oh, okay, so we'll deal with that then. Then last December, at the Memory Clinic, the psychiatrist delivered the 'Alzheimer's involvement' news. Oh great. So we've got vascular dementia AND Alzheimer's: any more little surprises on the way?

At the moment, my mother is still interested in what's happening. She's asking relevant questions, and sometimes recalls salient details about the condition when it affects her, but her emotional detachment is so marked I'm beginning to wonder if in itself it's a symptom. I have also stopped worrying about other people being told, including her friends and former colleagues. If they did imagine, at first, that it meant she couldn't enjoy seeing them or going out for a meal, they don't think that any longer. You can't destroy a stigma by pretending you don't carry it.

On the other hand, we are blessed with the attitude and the quality of the professionals who deal with her. They check what she wants to know before they share information with her. They explain things patiently and clearly. They are down to earth but tactful. Yes, I would say that they truly respect her as a patient. We're very lucky. I suppose it is still, too often, the norm for diagnosed sufferers to be pitied at best, and at worst written off for as speedy an end as ethics will allow.

I suppose what I'm getting at is that, though I completely sympathise with your wanting to protect your mother from other people's negative attitudes, and to avoid her being pointlessly frightened, it isn't the word that's the problem. It's the attitudes. It's the fear. They're the enemy.

I'm not in denial whatsoever. I try to protect my mom from certain realities, even though she probably won't remember anything. She knows her "head is bad" but has complained of that for 50 years. We even gave her a doll head for X-mas when I was ten. I did bring a note to the neurologist 3 weeks ago and he kept in in his file. I want him to know about behavior changes and I can do it discreetly. There are ten signs of caregiver stress and denial is the only one I don't experience.

Doctors who have seen a patient for twenty years get attached to them and seem to be in denial themselves. My MIL's MD NEVER uses the D word. I had to fill out the VA 2680 forms for him and he quickly signed them. " Oh, I'm glad you did this" was all he could say. He did not want to review any of the items with her, he seemed pretty broken up about it. She was one of his first patients when he started practice.

My mom's PCP never used the "D" word either...he would say memory loss instead. If I made an appointment to discuss my mother, he would then use dementia. Saying "memory loss" allowed my mother to continue to think she had age related memory loss and nothing more serious. At times it frustrated me that he would not say dementia in her presence because it gave her a reason to fight with me about taking Namenda. As as long as mom knew that Namenda was for dementia, she refused to take it. As she progressed, I was able to tell her the medicine was for something else in order to get her to take it.

I think it is perfectly reasonable to ask doctors not to use the D word in your mother's presence. You should also be prepared to deal with situations when a doctor has another view of his or her role or when some staff member does it without meaning to.

Whether a patient should hear that diagnosis or not is a personal decision and on a case-by-case basis. I wish you success in protecting your mother's sensibilities.

FWIW, they probably don't mean disrespect, just medical accuracy. If another term leaves mom feeling better than that you can suggest it to be used instead, though! We do stuff like that all the time, like calling diapers "hospital pants" and maybe saying tumor instead of cancer, as long as it is somewhere within the bounds of honesty and accuracy, e.g. not an outright lie. I could see talking to mom about her memory problems and needing help with thinking skills.

I get you OC our PC DR never says Dementia nor Alzheimers, although my husband can no longer change a light bulb, he totally goes off the wall when the ALZ word is used - after our last medication change episode & hospitalization we had an appoinment in two weeks with the psychiatrist that worked side by side with my husband, in the course of the visit the Dr, casually in a sentence, comes out with the ALZ word, my husband shot a look at me & I knew what was going to happen when we left, we didn't even get to the car & he accused me of conspiring with this Dr to have people believe he was nuts, 'twas not a good day. Yes by bedtime & the next day he did not remember what happened, but I agree it is startling, it's like they're talking about him behind his back. I also do the update letter prior to all Drs visit. This coming update will kindly ask him to refrain from using any words that are not needed I know what he has & so does the Dr, I just want to keep dignity in his life as much as possible.

Notes are always a good idea, because we get distracted and forget the questions. When he spits out a term you have not heard, ask him to explain it. If she has an MRI or CT definitely ask to see the pictures. Take notes and ask for copies of all written reports. This way you can go home and look up the words.

I have opposite problem, ocd, I WANT dad's docs to start looking at more serious issues, like dementia, but they all just seem to think as long as I'm around to give him his meds/care, they don't need to diagnose that area. I used to write notes or say something to doctor in the hall, too, before we go in the room. Because what my father says while he's IN the appointment is vastly different from what actually happens, or what he's actually capable of doing, outside appointment.

But if your concerned about doctor's hurting your mother's feelings (did I understand correctly that this is your main concern?), than talking to doctor prior to appointment might be the way to get them to refrain from being overly blunt or negative about prognosis. Just don't be too naive yourself, and realize when something is happening with your loved one, and maybe you just don't want to acknowledge… Good luck.

I totally agree about drs and terminology and giving the Dr a note before you see him. It is essential for you to understand exactly what you are being told regarding your mother so keep asking until it is explained in terms you are able to understand. You mother sounds as though her disease is far enough advanced that she remembers little of her appointments and probably can't remember what dementia is so if it is used in normal conversation and not spelled out in capital letters it will probably go right over her head even if it is hurtful for you to hear. You can help the process by researching as much as you can about parkinsons and the dementia which is different from other dementias in that physical disabilities occer sooner in the process. That way you will be better prepared for the Dr visits