Supporting my Type 1 partner to take a first step

I am not diabetic, but my partner has type 1. He has been living with diabetes for around 30 years. His method of management is, I guess, minimalist: He uses non-perscription insulin (Humulin), does not have any kind of meter for monitoring blood sugar and administers shots or gobbles skittles based on how he’s feeling. This seems to work, well, OK, for him during waking hours; not so much when he’s asleep. It’s the when he’s asleep thing that terrifies me, especially because we don’t live together. We’re in schools 1500 miles apart. He doesn’t have a doctor; he has minimal insurance provided through his graduate program. He hasn’t been to a doctor of any kind in years.

I can’t speak for him; I can’t know what it’s like to live in his body, to experience a different standard of what it means to feel “normal.” I don’t have to throw money at big pharma just to stay alive. I haven’t endured the periods of life-threatening poverty that he has, when he had to ration insulin and was practically starving. I haven’t suffered the kinds of losses he’s suffered in his life, things I won’t go into here out of respect for him. But he has had kind of a rough time of it. It’s no wonder, then, that he feels anger, resentment, frustration, and fear about his condition, and about the lack of resources, support, or understanding for someone in his position. I certainly do.

It angers and depresses me that our society and our health care system can’t do more for him, and people like him. Insurance companies treat diabetics like lepers…they don’t want to have anything to do with them. Unless you already have a good salary and good insurance, it just seems like you’re s*** out of luck. I have seen good, well-meaning people cheerily inform my partner, “you need to get a monitor, you need to get a good doctor, you need to do x, y, and z.” I know it’s well-intentioned advice, but putting that advice into practice means spending money and more money, endlessly, on care the majority of the population will never need, much less think about. And that sucks. Given my partner’s past financial difficulty, just the thought of the cost of decent health care is enough to make him break out in a cold sweat.

All that said, I know there are things that he can do with the minimal resources he has to better manage his condition. If he would just eat three meals a day, that would be something. Not being a doctor, I don’t know how it works, exactly, but it seems to me that if he would eat a more regular diet, he would sleep better, and if he slept better he would maybe drink less, and if he drank less he might have more energy and feel happier…

I don’t know how to get him to take better care of himself. He’s aware, intellectually, that the way he lives isn’t healthy, and that he needs to make changes. But emotionally he’s in denial. Many times when I’ve tried to bring up the subject of his health with him, he’s brushed me off: “I’m fine. I know what I’m doing.” I think if I could get him to talk with other people who are dealing with what he’s dealing with, who have had the same kind of struggles, it might be a good first step. But I don’t know how to make him do it, or rather to get him to do it for himself. I’ve given up telling him how much it scares and upsets me; he knows that well enough by now, but it’s not motivation enough for him. Finishing his PhD and starting his career doesn’t seem to be motivation enough for him. He has dreams about the future, but he’s not dealing with the present in a way that will get him there. What can I do?

I should probably add that in the three years we’ve been together, I have seen a number of really scary low blood sugar episodes, four of which resulted in my having to call the paramedics, because I couldn’t get him to respond to me, and he wasn’t capable of swallowing anything I might have offered. The numbers don’t mean much to me, but it seems like the last time this happened, the paramedics measured his blood sugar at 30 or thereabouts. From what I understand, that’s awfully low. I’m glad for his sake that when he comes out of his crashes, he has no memory of them. They are frightening, messy, undignified affairs. At the same time, I wish he could be in my position in that situation, and see himself the way I see him: glassy-eyed, sweaty, no muscle control, sometimes convulsing, sometimes belligerent, and completely absent. When I have to care for him in those moments, I have to care for someone who isn’t the man I love. It’s a difficult thing to do. It’s especially hard to go through it over and over again, never knowing when it’s going to happen next. When I say my partner needs to manage his condition better, this is the kind of poor management I’m talking about.

OK…

Most companies will send you a free meter, go online and look they are out there… next contact the meter company about the test strips… I never pay more than $15.00 dollars out of pocket for my test strips - explain the situation to them they are there to help you and again most will.

No one here can tell you how to get him to take better care of himself… he has to want that not you or anyone else.

Thank you so much for the reply. I really appreciate it. I/we will look into it.

Wow…this does sound frightening. Good for you for reaching out to others who can offer some sage advice. I have been in your boyfriend’s position (no or inadequate health insurance) and it’s frightening. It’s hard to live with a disease in which your life is literally dependent on something (in this case, insulin). Your partner is VERY lucky to have you. BUT, he has to be willing to make the changes. You can prod and support, but it’s ultimately his health and his condition. You sound very committed to him and that’s great, but he’s the only one who can do this.

First, he should contact AHCCCS (http://www.azahcccs.gov/Default.aspx). They are the state Medicaid agency. Even if he doesn’t qualify for Medicaid, some states do have assistance programs for T1s. They may be able to hook him up with free supplies. At the very least, he needs test strips and a meter.

Second, he should contact the American Diabetes Association. They often have good resources for accessing supplies for folks who don’t have insurance.

Third, he needs to find an endo. I once was without insurance and an endo accepted me on a sliding fee until I was able to get coverage. He should call around and explain his situation.

Fourth, if he’s in grad school, his school’s health center may have resources available.

Fifth, he should contact LifeScan (the company that makes One Touch Ultra meters) and Eli Lilly and see if they have any sort of assistance programs available.

Health insurance coverage is a huge issue in this country, especially for people with a condition like T1 diabetes. BUT, there are programs/resources out there. You just have to look.

Finally, be aware that T1 diabetes and depression go together like milk and cookies (hahaha). With T1 diabetes, you lose the production of several hormones, throwing your entire body out of wack. Add to that roller-coaster blood sugars and things just get worse. But depression is manageable, and he would probably feel a LOT better if he just tightening up control. He doesn’t have to do a whole lot; I’ve used non-prescription insulin many times over the years (for a variety of reason) and had great control with it. It’s the lack of testing that concerns me more than anything.

You have to ask yourself some tough questions.



Is he an alcoholic? How much does he drink and how often? Does he hide his drinking from you or others? If he is, then I would address that before trying to address the diabetes. Drinking to excess with diabetes is never going to end well. If he really doesn’t have the money to improve his diabetes care, then how can he justify spending any money on alcohol?



If he was sober we could give lots of useful advice - like getting an A1c test (sometimes free at drugstores otherwise cheap to mail order) to see how well he is managing - or when to test and how to adjust insulin - or getting NPH insulin too (same price as the generic Humalog he takes) to get some basal insulin - there is a long list of helpful advice we could give. But if he is an alcoholic and unwilling to address that first, it sounds to me that he is unlikely to make progress with his diabetes.



Type 1 are always prone to low BG, but usually not as extreme as the ones you describe. With better management the severity and frequency of those low BG attacks should lessen, but there are no guarantees they can be absolutely avoided. How does he afford the ambulance calls? Those are enormously expensive - spending that money on improved testing and management should prevent the ambulance calls and greatly improve his health. But in my opinion it may all hinge on him first stopping drinking.

Emily, I won’t add to the good advice already given, but want to applaud you for reaching out. I’m sure you’re terrified, especially being so far away. Please accept my hugs and give yourself some too. There really is nothing YOU can do, except what you already have by reaching out here.

Remember to breathe :wink:

Lifescan does NOT have any assistance programs with meters or strips!

(They were actually kind of nasty about it… like how DARE i ask this of them!)



Try Abbott (freestyle) , or Accu-Chek…I ran into this a long time ago and Lifescans like. Sorry we dont offer any financial assistance on strips… Even their promo meters no longer contain more than 10 strips!

On the other side of the coin… Abbott seemed very friendly and faxed me some forms to fill out…and had more success…

I can’t recommend Bayer Diagnostics. I switched meters once and they bilked me the full retail cost for a new cable… and it was at that time about 34$ when i was using their meter regularly… Almost EVERY other company offers a discount/rebate/promotion on data cables… and this was just after i bought the other cable.

This is great advice, thank you so much. Also, you’ve reinforced a lot of things that have occurred to me, which is encouraging. When he’s doing well–that is, eating better and getting some exercise and so on–he seems to have a lot fewer problems with regulating, and he’s happier, and that’s always good to see. I agree that he doesn’t have to do a whole lot; doing a little would make a big difference I think. I was under the impression that testing supplies were really unaffordable without insurance, but from what I’ve seen on here, I guess that’s not necessarily the case. If he could get access to affordable test strips that would be great. I’ve encouraged him to check with his campus health services; maybe they can help him out with that. Thank you for the suggestion about AHCCCS; sadly, though I am in Arizona, he is not. I don’t remember if he tried to get coverage through them when he was living here before. In any case, I’m sure there must be an equivalent program where he is.

What state is he in? I know a bit about state Medicaid programs. Let me know. Happy to look into it and give you any info I have.

Yeah, that’s a good point re: the alcohol consumption. I am not a big drinker, but I do like the occassional glass of wine or drink when out. But I consume alcohol with great care, which includes constant testing to make sure I’m not going too low. IMO, a T1 should NEVER drink alcohol without the ability to test and see where they are at.

About the calls; we avoided having to be transported to the hospital, thus far. You don’t get billed for first responder care, or at least he never has been. That said, the point that emergency care is far more expensive than preventative care is well taken. An ounce of prevention, etc.

About the drinking: he drinks more than he should, I think it’s fair to say. He knows it and I know it, and we’ve talked about it. He has taken steps to cut back, though he could do more, surely. The drinking thing is complex, and I am aware of the ways in which his drinking habits and diabetes management issues are related. My honest feeling is that if he has the inclination to try and change his habits (and I think he has the will to do it, he just isn’t quite ready yet), he’s going to have to address his diabetes treatment and the associated anxieties about it first. If he can move in that direction, my hope is that it will become easier for him to modulate his drinking as a consequence. We’re definitely addressing it, but one step at a time.

Mississippi. That’s very kind of you.

I hadn’t thought of that. I would really like to see him try that.

Thank you, hugs accepted!

If he has a drinking problem (and I don’t know that he does), then cutting back can be impossible. It’s really all or nothing. Could he stop drinking completely for a month, or strictly restrict himself to one drink (one beer) a day? If not, then cutting back won’t work. If he CAN stop completely, then he is much more likely to make progress managing his diabetes.



There are many reasons to address the drinking before the diabetes. For one thing, it directly affects blood sugar (BG). And if you drink too much it can lead to exactly what you’re seeing with the crazy low BG overnight. This is because the liver is so busy handing the toxic alcohol that it can’t produce glucose (via gluconeogenesis). So once his glycogen stores are depeleted he will get a very low BG. Drinking also lowers the cortisol and growth hormone levels, which also makes low BG more likely. The low BG can come many hours after drinking - like overnight while sleeping - until your liver has fully rid itself of all alcohol. The risk of low BG is much more likely after drinking alcohol for these reasons.



For another thing, drinking makes you unaware of your body’s cues that it is having a low BG. Even more so if these come when you are passed out from drinking. This further increases the chance of a low BG. And when you’re drunk you’re much more likely to not care about your BG - since you don’t really care about that much of anything - so you may get a wildly low BG or a wildly high BG if you decide to eat a big chocolate cake.



Finally, if he isn’t addicted to alcohol, then managing the alcohol is MUCH easier than managing diabetes. To manage alcohol you simply stop drinking any alcohol - problem solved. Managing diabetes isn’t nearly so simple - we can’t simply stop eating and we can’t stop taking insulin - it’s a constant balancing act.



One step at a time is right - but trying to take steps toward managing diabetes when no steps are being taken for a drinking problem is a recipe for failure.

It’s wonderful that you are here getting advice! You are right to be concerned about him.

I think it’s important for you to know what the standards are for a Type 1 diabetic. You mentioned your boyfriend’s management is working ok for him except at night, but how do you really know? You know that he’s gone low and had siezures because these are obvious, but if he isn’t using a meter or seeing a doc for an A1C test you really don’t know what the heck is happening in between.

A Type 1 should ideally test his blood sugar several times per day. My daughter is 14 and tests about 8x-10x per day. 1st thing in the morning, before each meal, 2 hours after each meal and before bedtime (that’s 8), then there are also tests if things go off track - exercise that lowers blood sugar, adrenaline that increases blood sugar, guestimating carbs, etc. It is a pain, but this disease has serious complications that we all want to avoid.

Also, seeing a doc could make his life a lot easier. There are different insulins that could smooth out the peaks and valleys for instance. It costs money, but isn’t he worth it?

What really worries me is that if your boyfriend never tests, he could have easily lost his ability to recognize highs and lows. If he runs high for long periods of time then this begins to feel like “normal” and if he runs low for a long time same deal.

I hope you will check out the financial resources already posted, someone should be able to help him get test strips.

Ok, maybe I forgot to take my compassion pill this morning. I’ve been reading this post and the responses and trying to sit on my typing fingers, but frankly, I’m appalled! I can’t decide who is more in denial the “supportive” wife who is hovering behind her man while he slowly kills himself, or the Type 1 diabetic who is taking the fast boat to oblivion, and just hasn’t decided yet which combination of booze and blood sugar will get him there faster! What astonishes me is how he has survived for 30 years! Ok, he doesn’t have good insurance because he’s in graduate school. Been there, done that and had to get food gift bags from friends. Poverty is hard. But #1 people have suggested checking out possible resources for supplies. Has he bothered doing that? #2, like many people, I got my degrees while at the same time having to support myself. It’s hard work, but it can be done. If you don’t have rich parents supporting you through school it’s what you have to do. Jobs give you a better chance of having insurance (though I realize it is no guarantee today).And bottom line is health is more critical to life than an advanced degree.You say he has “had it rough”, it sounds like you are both pretty good at making excuses. If he is suffering from Depression, yes, that makes treatment harder. But Depression is also a medical condition that needs treatment. And it is one that affects everything else.



A type 1 who doesn’t have a meter and doses based on “feelings” is imho a type 1 with a death wish. Abusing alcohol kind of goes along with that profile. Is this who you want to share your life, perhaps raise a family with? Personally I would run as far as possible, 1500 miles sounds about right. “He is taking steps - willing but not there yet”. Yes, many people with diabetes go through periods of neglecting their management for various reasons (he must have done better than this sometime in that 30 years!) then they get back on the bandwagon, but steps entail testing, more, seeing a doctor, eating better, improving blood sugars,etc. Steps don’t entail saying “I know what I’m doing” when he so clearly does not. The only steps being taken are by you, Emily. And that never works. You can’t change someone who has no desire to change. All you can do is feel sad, frustrated, frightened and alone. And all he can do is continue to disrespect you and himself.

Why the hell would you say something like that to a person? You’re jumping to a lot of conclusions about what’s going on with my relationship, and I don’t appreciate it, quite honestly. I’m just here to learn and find out what the options are. I’m not interested in representing myself or my boyfriend as a martyr. Keep your psychoanalyzing to yourself.

Your points are well taken. I didn’t think of it that way, and what you bring up is something worth discussing with him. I really appreciate your comments.