how to advocate...

[njfolk]

Hello All,



MY wife was Dx about a year ago and is about to go see a new neuro. She is having some cognitive issues and is very flustered when she is actually at the doctors so I will have to be advocating for her. The problem is I have disagreed with almost all of her decisions regarding her treatment course.

How can I communicate her needs/wants to the neuro, when I don't agree with them?

I would suggest that you or your wife write down what her needs and concerns are prior to her new neuro appointment and then give this paper to the neuro. This way all of her concerns, questions, treatment decisions, etc. are right there for the new doc to see and hopefully she will be less flustered.

It would be hard to advocate for a path that you do not believe is the correct one. Try to be as supportive as you can and ask questions during the exam. Be sure to discuss any concerns with the doctor and your wife. Even if she does not agree at least you've given your perspective.

Hang in there!

Teresa

[Jules A]

As someone who works in health care I often have to advocate for my patients even when I disagree with their choices. It will be so much harder for someone in a relationship like your situation but it can be done and really is about her wishes unless you think she the disease has rendered her incompetent which would open a whole new can of worms.

I would definitely be clear with her physician what her wishes are but also add your perspective and maybe without ganging up against her if your ideas are more congruent with the doctor's you both can encourage her to consider a different approach.

Much luck to you, this is a tough one.

[justacowgirl]

I have to agree with Jules A. I was a professional advocate for years.

This is about your wife. Your job as an advocate is to make sure that she gets the care that she wants. Unless you think her to be incompetant she is a functioning adult and allowed to make her own decisions.

Obviously you love your wife and want her to have the best care possible. But, you are only a witness to her disease. She is the one who will carry the burden daily. Allow her the dignity of choice and make her feel good about whatever she chooses.

You will be glad that you did.

[sunshine008]

hi,

I agree also, advocating is just that. It may be hard to not agree with her choices, yet a huge part of MS I have learned is feeling like we lose control over our bodies, future, minds with cognitive issues. So, she probably needs this decision to be hers, to gain back part of her control.

So, I think it's super important that you just simply help her advocate for herself and just simply go with the flow on this one. Unless ofcourse she'll actually harm herself with her treatment course. yet if that was going to happen i'm sure the neuro would jump in and tell her.

good luck, be patient that's one of the hardest things i think with this disease.

your a good partner for caring enough to help her, and go with her.

[moppy]

Advocates

I strongly believe in advocates supporting patient choices while assuring the treating physician has complete access to patient questions, symptoms, etc.

How do we find an advocate who is not the patient's significant other, spouse or family member?

I am looking for a way to help my son-in-law, age 56, whom I just learned has been treated for MS for several years and to my knowledge doesn't have an advocate. He and my daughter do not live near us. I believe they are struggling with depression and dispair and I worry so.