help with/for insulin dependent MIL, please!

[Kestrel]

help with/for insulin dependent MIL.

We had a major incident late this August. She was sick, throwing up for three days at least, and then was so out of it the next morning that DH and FIL called 911 and had her taken to the ER. She was extremely dehydrated and hadn't taken her (oral) meds for days. The EMTs took her blood sugar, and it pegged their chart, which goes to 800! So it was higher than that. It took three days in intensive care, but they got her kidneys working again (which shocked me, actually.) We find out later, all she ate/drank for those three days was hot chocolate with spray-can whip cream and orange soda. !!! Dr tells her she's extremely lucky to be alive, and will now be on insulin forever. She stays in the hospital eight days.

MIL & FIL leave their house near us and drive the 1200 miles or so back to S California.

MIL is now in the hospital AGAIN. This is the FIFTH time since they left here in early September that's she's been admitted. (Now they're too far away for us to help much.) This time, it's the other way.. her sugar was so low that she was unresponsive when FIL woke up in the morning.

As far as we can tell from here, MIL is simply refusing to do what she needs to do. FIL as early-stage memory issues, so it not a totally reliable, but he says MIL has not tested her blood since she got out of the hospital the LAST time. (He says he remembers the nurse getting her a new pack of test strips because there were only two left, and the new pack has not be opened.)

I'm so frustrated. DH is an only child. There's nothing he can do from here, really. It's tearing him up. MIL is extremely stubborn, and DH says she's going to do exactly what she wants to, and that's it. Well, if it doesn't kill her, she'll be on dialysis soon at this rate - I'm really shocked she's made it this far. I'm complained on here before about the in-laws eating habits - they regularly go through 2-liter bottles of soda, a bottle EACH, EVERY day. They eat tons of processed food, potato, white rice, candy - about the worst diet you can imagine for a diabetic. Right now, the hospital gets everything under control, sends her home, and two or three weeks later, we do it all again.

I am pleading for help/suggestions. I'm at a loss if there's something, anything we can do. Other than wait for her to not wake up one day.

[PZMommy]

Maybe try to set up a home health care nurse to come and visit and check her sugars??

[TwinFoxes]

Maybe the hospital social worker can help? This isn't just a physical problem if you ask me. Something's off mentally.

[abh5e8]

Does she make her own decisions? If fil had memory issues, is your dh the dpoa? If not, he should be, for both of them. Unfortunately, you can't make someone take care of their health, and is sounds like mil just does not want to follow the dr's advice.

[roobee]

I probably have a really unpopular point of view of this, so forgive me. Have you asked her what she wants? Maybe she wants to die. Really, really truly if I were in your MILs condition I don't know how much effort I would put into prolonging the inevitable. Though if that's what's going on it doesn't really explain why she keeps going to the hospital.

Does she seem to understand why all this is happening? Of course it's possible that she's having mental issues, but it's possible she knows what she's doing.

Depending on my age and other health issues I'm pretty sure I would make the decision to not start dialysis. I recognize that I probably have a weird view of death, but everyone dies - I'd prefer to be in control of how things end.

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[Simon]

She sounds suicidal, honestly. If she has a clear/firm understanding of the risks her behavior poses to her health, then it sounds like she is making an informed choice to ignore standard treatment. Perhaps a psych. hold is a possibility, but you cannot make her follow treatment. It sounds like she has had several brushes with death and is unfazed.
If Dh is okay backing off, then you should support him in that. I have a parent who is taking a similar (though longer road) to a self-inflicted death. I used to try very hard to encourage/remind/support following appropriate steps medically. It took me nearly a year, but I realized I cared more than the actual patient did about their life/death. I had to step back and realize this person is an adult and fully capable of making better choices if s/he wants to.

[StantonHyde]

I will second the "maybe she wants to die" idea. Dialysis is not fun and not really a way to live for many people. I second asking her what she wants to do and does she understand the ramifications of her actions. The hospital social worker can help with this. Or a crisis worker in the ED. or a minister, counselor, etc. You really need to sit her down and have a frank discussion while she is lucid. She should spell out her wishes and write an Advance Directive. That way everybody is on the same page.

She might have mental issues and that is worth exploring. But she may be choosing this behavior--lots of people do.

[Kestrel]

To clarify - she is not on dialysis yet, but we have been told that's the next step if she doesn't get her sugars under control. My mother has been diabetic for 30+ years, and is far healthier than MIL has ever been in the 15 years I've known her. I agree that dialysis sucks; but it seems like she's in the fast lane to get there!

There are plenty of people that can live with diabetes, but it takes daily effort MIL doesn't seem to be willing to put in. Also, they've eaten so crappy for so long, she just cannot do that on a daily basis anymore. She's ignored Dr instructions about her diet and meds for years, she's just continuing to do so.

I have been trying to get DH (only child) to get healthcare proxy and POA done, but it hasn't been done yet. We got them to tell us they actually made a will, but not where it might be. It's quickly getting to the point that they NEED some help, and they flat-out refuse to move completely up here, even though they already own both homes (WA and CA) free and clear. They really have no friends/social life there, as best we can tell. We cannot go to them, even for a couple of weeks - it would bankrupt us.

My only suggestion was to see if Kaiser has some kind of class or something to teach her to better manage - but honestly, I don't know that she'd go. I wonder if her insurance could mandate it? They keep paying for the ER and in-patient care! Tired of the revolving door - why don't they see there's more going on here???

[StantonHyde]

Kestrel--if you can talk to the ER social worker--yes, they can sort of mandate it. If they can get her on the "frequent flyer" list, then they put the patient on a contract that dictates when they go to the ER, for example. BUT--and this sounds awful I know--your MIL might not be at the top of their list of worries. There are people who cost more/are worse off/more of an issue. But I would start there. Do you have a Release of Information (ROI) from MIL for you and DH-so that the ER can talk to DH. You need a separate ROI for each provider--now maybe you don't if they are in the Kaiser network--but the Social Worker could tell you. If you don't have the ROI, nobody can talk to you. You can call them and say what is troublesome but they can't respond. I would call the ER social work manager and ask what steps you need to take to get MIL on the FF list and to get a care contract. It might actually be easier with Kaiser. Good luck!

[roobee]

What I'm hearing from your post is that you want MIL to behave differently and MIL doesn't want to behave differently. Now you'd like to know if there's a way to make MIL behave differently.

I think everyone's time would be better spent finding out what your ILs plans are, medical and financial. Unless there is a significant mental issue that can be addressed it really seems like she is making her choice by not bothering to care for her medical problems.

I'm sure this is really hard for your family - I feel bad for your DH, it would be really hard to watch someone you love go through all this.

One thought would be to ask MIL if having a daily visit by a nurse or health aid is something she'd be interested in, or maybe a meal service like Seattle Sutton? I really feel it's important to ask her opinion for these things - it is very possible it's her plan to continue on her current path.

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[dogmom]

I don't believe she's suicidal, as pp have suggested, although I agree it appears she is making choices that will shorten her life and make no sense to you.

The best thing to do would be to re-frame the issue. First thing I would do is instead of thinking of this as "My MIL is making these poor choices that is effecting my DH, me and my family" you need to think of it as, "How would I feel if my child's and his/her spouse started telling me what to do? About issues I really don't want to talk about?" She's an adult, you DH is her son, you can't get rid of that dynamic.

Have you asked her how she feels about her health? Or her diabetes? Or where she lives? Or what it's like to get old? Not "what are you going to do about your health?" But "how does it make you feel" and don't say anything! Don't suggest anything. Turn that part of your brain off. After a few conversations like that you might be ready to talk about how this situation makes you feel. "I feel bad for my DH that you guys are having problems and he/we don't know what to do to help. We would like to help." That's all. Say your piece about how it makes you feel, that you would like to help, then step away. Some people, don't deal with aging and their mortality well, so they will just not do it. Most people don't want to deal, but will deal in their own time, and you can't force it. You need to make it so she feels she is in a judgment free zone for her to talk about this if you are going to get anywhere.

And of course the people in the ED know what's happening! And exactly how are they going to force her to do something else? You guys can't. In the end she's living with the choices of her decision, sure it effects you also, but she's going to bare the brunt of it.

[JBaxter]

Nothing will get better unless she wants it too. Every person I know that went on insulin was set up with a nutritionist and had a class on how to manage their blood sugar. If she went would be another story. If its been years that she's been on oral meds and she hasnt changed I dont see this being a game changer for her. I have a real hard time feeling sorry for people like her.

[DualvansMommy]

Sounds like such a tough situation for your DH and yourself! Working with someone like her is almost impossible for you guys, so I recommend talking with the ER or hospital social worker, like pp said.

If she is mentally competent, self sufficient (for most part) there isn't really anything you guys can do without ROI or POA.

DH lost his long time friend 5 years ago due to complications from diabetic and kidney failure. Like your MIL, he had the world crappy diet and no matter how much his friends, his father told/advised him he didn't take heed. He was on his way to being on dialysis, and after that news from his doctors, I felt he just let go because he died in Dec after being told in July.

All this to say is that as hard it may be for your DH, your MIL is the only person who has to want the treatment plan. Try the social worker and go from there, it wouldn't be completely new to her/him.


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[bisous]

Okay, I may be WAY off base here. I am the mother of a child with type 1 diabetes, so different disease and different patient. BUT there's a few things I know.

First, if her blood sugars are swinging between "low" and over 800 she must feel terrible all the time. I think it is perhaps hard to feel sympathy for someone who (much of society) feels like "brought on" their own illness, but medically it isn't so simple. And is eating processed foods really deserving of censure so severe that we damn a person to feeling terrible all the time and slowly killing off vital organs? No, whether or not a person with type 2 diabetes "caused" it (and that is debatable for many people), it is an extremely severe punishment.

Also, I think we need to remember how overwhelming and hopeless it feels to feel terrible all the time and how psychological difficult it must be to have to determine the healthiness and nutrient content of every single thing that you put in your mouth. Yes, many of us do this to some level but believe me it is different when you have to evaluate with a number after every single meal. It is daunting and overwhelming, especially as diabetes progresses. I wore a continuous glucose sensing device for a week as solidarity with my son and I don't have diabetes. Every number even slightly elevated made me feel so guilty and scared. And the messages in the media only reinforce this. Can you imagine doing that every single meal, no breaks ever for years and years?

So as some people get older I can only imagine how sick of the whole thing they get. Sick of the judging, sick of the constant monitoring, always feeling guilty, feeling physically crummy (which I think is actually a huge component) and I can so easily see why some people just throw their hands up and want to give up. Not because they want to die but because they feel hopeless and wonder what's the point. Also, it is so slow a process that I think there can be a lot of denial involved.

Here's a thought, and it might sound crazy. It is just an idea. One thing I've gotten out of my discussions with type 2 diabetics is how tired of their diets they are! By contrast, my type 1 diabetic is advised to eat whatever he wants (seriously!) because insulin therapy is so good that lots of foods that used to be forbidden are totally possible to eat. That may sound bad, diabetics eating candy and pizza and donuts. And I hate that too from a health perspective, but I promise I am a BOSS when it comes to manipulating insulin and have gotten to the point where I don't feel like many food are off limits any more. It is interesting because as I've become better at managing blood sugar, DS becomes more motivated to eat well, because he likes how good he feels. Removing the blood sugar component from the equation makes eating less pathological and damning and leads to better eating in general.

Does that make sense? A good endo or CDE could teach her how to eat whatever crappy food she likes and while it may still stink from a nutritional standpoint, the diabetes factor can be taken care of. I really believe that once blood sugars are normalized (a little--there will always be a lot of variation with diabetes) that it is more motivating to follow other aspects of self-care, like nutrition and exercise.

So PROVIDED SHE HAS GOOD INSURANCE, she can meet with a good CDE and get set up with Lantus or an insulin pump (I ESPECIALLY love insulin pumps for their flexibility) and have the CDE teach her how to eat like she wants. Yes, she has to test blood sugar, and inject insulin (or change out insulin pump infusion sets) but the eating portion of her stress can be almost totally removed.

[ellies mom]

Bisous brings up many very good points. Food is so much more than just how we fuel our bodies. We use it to bond, we use it to celebrate, to mourn, to escape. We have likes, dislikes, costs, knowledge and access issues involved with what we eat. We develop a lifetime of habits around food. Changing your diet is hard. It requires a huge amount of motivation. And it can be overwhelming. And to have that change basically forced on you sucks. And then add in testing your blood sugars and injecting insulin and accounting for illness and whatever else, well that is a lot. Ideally, the entire household needs to be willing to change as well. For example, if your FIL continues to guzzle down soda, it is going to be a lot harder for her to stop.

I have a huge amount of empathy for people who have to make those changes. I also have a huge amount of empathy for the family members watching from the side. She is an adult. You can't force her to do the things she needs to do. I agree that the best next step is to find out what she wants. Find out her concerns and fears. See if you can get her set up with a diabetes educator that can help manage roadblocks. Maybe she doesn't know how to cook healthier food that she likes. Maybe you need to get FIL on board. Is he willing to change his diet also so they are on the same page or is he expecting her to make the changes while he continues to eat the way they always have?

[Kestrel]

As always, thank you all for your opinions and words of encouragement. All info at this point is helpful! (Off to look up CDE!)

We got word that MIL is coming home this morning (Dec 24th). In our first positive news, the Dr has changed her dosage to try to avoid these extremes she's been getting. She also is scheduled a follow-up in early Jan. (I'm not clear on the dosage thing, I was at work when this was discussed.) But even though she's been in the hospital repeatedly, this is the fist time there's been a scheduled follow-up. We (DH & I) are hoping this is progress. We are trying to get her to ask for help; as far as we know she's had no teaching/consulting at all about this issue, except during her inpatient care.

But, home for Christmas - we're trying to let it go for a bit, and then try push for her to get some more help with managing.

[NCGrandma]

Hope you can help her find a certified diabetes educator (CDE). No personal experience but one of my former colleagues was a CDE (and a family nurse practitioner), and I heard him doing some group teaching/support sessions. His approach was a great combination of clear information, and supportive without ignoring issues that needed to be pushed. Although he certainly saw individual patients too, he found that group sessions were very helpful for many patients.

If it looks like a CDE would be helpful for her, be sure someone checks on insurance coverage in case there are restrictions like the CDE has to be part of the same practice as whoever is primarily managing her diabetes, or the CDE also has to be a nurse practitioner, or whatever. None of this may be relevant, depending on her insurance, but it would be a shame to find a good diabetes educator and then run into bureaucratic roadblocks re: payment.



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[hellokitty01]

I agree with the recommendation of a cde counseling. She will need a referral for it, but the cde work with people with diabetes at all different stages and can customize a care plan and lifestyle management strategies with her.

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