January 26, 2009

Other People's Diabetes: Back Off!!!

I get a lot of mail from people who are concerned about a relative's blood sugar. Often the relatives are parents who are in their 80s or older. My correspondents ask how they can get mom or dad to eat a low carb diet or use a more aggressive drug regimen to normalize their sky high blood sugars.

These people love their relatives and want them to be healthy, and I respect that. But their concern tempts them to cross an important barrier in a way that I, as a person with diabetes myself, consider invasive.

I feel very strongly that no one, and I mean NO one, no matter who they are or how concerned they might be, has a right to tell an adult with diabetes what they should eat or what drugs they should take. Those decision should be made by the individual with diabetes and no one else, because the person with diabetes is the one who has to eat the food, live with the side effects, and suffer the consequences of whatever choice they make.

This is a fundamental human right.

We can mention that there might be some new ideas--backed up by solid research--that others might find helpful. We can describe our own success. If people ask us how we achieved that success, we can explain what we do and reassure them that there are techniques out there that will work for them too, no matter how bad their current health might be. But we should not go beyond that.

I eat what I decide to eat, and what that is is no one's business but my own. I make that decision at every meal, every day of my life--and what I decide to eat changes from day to do depending on a wide variety of factors. Everyone else should have that right too.

It is painful to have stand by, unable to intervene, when so many people with diabetes are being given very poor dietary advice and even worse medical treatment--advice and treatment that shortens their lives and fills their days with unnecessary suffering. But I believe that the only legitimate way to address this pain is to share information with others in a way that leaves it up to the person with diabetes to decide how they want to deal with that information.

This belief informs everything that I, personally, do as a diabetes patient advocate. I make information available to people who have decided they want to improve their health. I do not evangelize to those who have not made that decision.

People who look for help with their blood sugar who turn to Google will find me. Google loves my Blood Sugar 101 web site. People searching Amazon for books will find me too now that Amazon has been featuring my book near the top of its "Type 2 Diabetes" bestseller list for several months.

Because those people have chosen to seek better information for diabetes, I give it to them--lots of it. But I leave alone those people with diabetes who are not looking for better information and don't believe they need it.

If I meet them in live social situation I may mention that I have diabetes if it comes up in a discussion. If it feels right, I might mention that I've been very successful in controlling my blood sugar over the years using a low carb approach and keeping my blood sugar much lower than the levels most doctors recommend, which has let me avoid complications.

What I don't do is tell people that the doctors who tell them their 7% A1cs are "great control" are idiots. All that does it convince the person I'm speaking with that I am an idiot. If they mention their 7% A1c with satisfaction as proof they are in great shape, as all too many do, I might murmur that I've seen some interesting research that suggests this level isn't low enough to prevent nerve damage and that some of my friends have found that lowering their post-meal blood sugars below 140 mg/dl has eliminated nasty foot pain. If the person has foot pain, they might find that interesting. Many people with Type 2 don't, and the conversation ends there.

You can talk yourself blue in the face about the wonders of eating a low carb diet or the importance of maintaining normal blood sugars, but if the person you are talking to is content with their their situation, brainwashed by the drug and food companies, and trusts their doctor, all your talk will do is trigger anxiety, denial, and hostility towards yourself.

If the person involved is a family member, it will also trigger a lot of other, even less pleasant responses. Your 82 year old mom still remembers very clearly those days back when you were being toilet trained and this colors her willingness to take medical advice from you. Your husband, no matter how much he loves you, is likely to have his own issues about being bossed around by women--he had a mom, before he had you--and if you start getting between him and his food supply, no matter how well intentioned you are--you may end up with what those of us in the computer field call, "Unpredictable results" a.k.a. total system failure.

Brothers and sisters have their own reasons for ignoring anything you might tell them. If you're older than they are, they don't like being bossed around. If younger, what could you possibly know? Ask yourself, how often do you take unsolicited advice from them?

The situation becomes more complex when we have actual responsibility for these family members. If they are children, we do get to decide what they eat, for a while, but if we are wise and want them to succeed long term, we are very careful to bring them into the process of taking ownership of what they eat as soon as possible. We give them the information they need to make good choices, give them positive feedback and support, and are very careful to keep a healthy diet from being something they are forced to eat because a parent has imposed it.

Why? Because iids grow up and part of that growth process involves throwing off, sometimes violently, your control. If eating properly and controlling blood sugar is perceived to be your issue, when they get out on their own, kids may prove "you aren't the boss of me" by eating everything you've told them not to, running high blood sugar, and royally screwing up their health.

If you have responsibility for an elder who can no longer take care of themselves different factors come into play. If they are in a nursing home you may not have any ability to intervene in how they are fed or medicated. Nursing homes universally follow the old ADA dietary guidelines: lots of carbs, no fat, and if meal time insulin is administered, it is administered with the outmoded "sliding scale" technique that prevents hypos by keeping post-meal blood sugars very high. Institutions know they can't be sued for following the traditional dietary advice so they will follow it. If you protest, they'll tell you to find somewhere else.

If mom or dad is living on their own or with you, you have more options, but there is an important point to keep in mind: The health benefits your 80 or 90 year old relative will reap from better blood sugar control may not be significant enough to justify taking away all their favorite foods and, in their view, forcing them to eat in a way they aren't comfortable with.

This is an important point. If you are 50 years old, the diabetic complications you might get at 60 or 70 if you ignore your blood sugar are significant and it is worth making sacrifices to avoid them. If you are approaching 90, the chances that you will live long enough to get--or significantly worsen--those complications is fairly small. And when someone is 80 or older it is also almost certain that they have well established complications already--most notably heart disease--which have gone past the point where any diet will reverse them.

If that is the case, why not let mom eat what she wants and enjoy her food? If she is like most older people, she isn't eating much, anyway, and the loss of muscle mass from the natural anorexia of old age is a much bigger threat to her health than elevated post-meal blood sugars.

If your 88 year old mom is in the kind of shape where she is still windsurfing--or knitting beautiful sweaters--and your family has a tendency to live to 105, it might be worth discussing with her the benefits of keeping blood sugars normal by cutting back on sugars and starches. But if she is in that kind of health it is also likely that she has normal blood sugars and doesn't need to eat the way that you must--which is why she has stayed in such great shape as she ages.

There is no "one size fits all" solution for diabetes. That is the key idea that underlies all my writings. I know what works for me. I have heard from a lot of other people about what works for them--some of which would not work for me at all. If you stop by this blog or my main web site, I will do what I can to give you the information you need to know to best figure out what will work for you.

But once you pick up that fork, you're on your own and that is how it should be.


Unknown said...

Amen, Jenny! Thanks for the manifesto.

KellytheKitchenKop.com said...

This is going to be one of those posts that I will have to read and re-read often.

I tend to care too much about what my sick family members are eating (and what advice they are believing), and while I *usually* keep my mouth shut, there are times I slip. This will help me to do better.


Anonymous said...

Thanks for making another one of your great, in-depth, and reality-based points here.

I'm totally understanding where you're coming from because I'm the same way, I struggle to keep my thoughts and latest research that comes across my computer screen to myself--I want to save everyone!
You're not alone on this one!

Anne said...

Thanks Jenny, again, great advice. I have family and friends who have told me to "Back off". They are not open to anything that does not come from their doctors. It hurts me to know they could be healthier, but they are not willing to look beyond the treatments prescribed.

Hard to keep my mouth shut at times, but I try. Adam, I understand wanting "to save everyone."

Anonymous said...

I am doing better at this, but there's still plenty of room for improvement. Thanks for the reminder. I will re-read this many times, I am sure!

Anonymous said...

I have a friend like this that I am trying to get through to. He used to be a farmer and farm manager and now has a gardening business and a photography business so the activity arm is well covered. He's mostly quite fit and slim but with that typical pregnant basketball stomach. Unfortunately he's been pretty much brainwashed into believing that he will decline anyway so he eats his Healthy High Carb Diet and pops his pills and already has the beginnings of retinopathy. Also he has been talked out of testing which he didn't like doing anyway as the numbers were always crap. I'm trying to lead by example, but *carefully* when what I really want to do is beat some sense into him with a big low carb stick

Anonymous said...

Thanks for the reality check Jenny.

My nagging-the-loved-ones results so far: my Mom listened, read your book, and is doing much better. Her sister, my aunt, read your book, thanked me most sincerely, and now shoots more insulin but hasn't reduced her carbs one bit. But...both my mother and my aunt have their Diabetes 101 book out on loan to other people.

My 44 year old cousin thinks his AIC of 6.9 is terrific (with medication!) and told me his Dr. knows more than my website (you) and that I should butt out. When I told him his youknowwhat wouldn't work if he kept on eating M&Ms before bed, he told me it didn't work anyway.