Sunday, March 28, 2010

Lows, lows, lows...

Well, it happened again today. One of those scary low blood sugars in my husband when I least expected it. This was a bad one - I am lucky to say that in our 12 years of dealing with his diabetes (since he was diagnosed), I've only really dealt with a handful of "serious" lows... the kind that make your stomach knot and your knees weaken, when you realize the place your loved one is in and you don't know exactly how much time you have to intervene before it gets to the calling-the-paramedics kind of low. I'm sure you all know what I mean.

Luckily we were in a stable place when this happened - at home, the kids happily engrossed in a movie - so that we were able to move through it and come out the other side quickly. Funny thing, because of the kind of low this was - i.e., my husband got so low that he was not making sense, lost his judgement of things, and was becoming combative at my attempts to get him to test or drink some juice - and because we sat together as he was coming back up and out of it, we had a chance to talk about what had happened (once he was relatively normal again) and to figure out what we could do differently next time. It was a real learning for me, and I wanted to share with you my thoughts, in case it might help you in the same situation.

Learning Point #1: Back off, way off
As I realized how low my husband was (even though he refused to test or let me help him test in that state, which just validated how low he was), my anxiety kicked into gear. My hands started to shake. I tried to stay calm and "convince" him to have some juice simply because I wanted some too ... and I placed it on the table in front of him. However, the more I asked him to drink it, the more he rebuffed it and pushed it away. The more I gave his meter to him at the table, the more he refused to do it, saying "I didn't get it!" (whatever that meant at that time, I'm still not sure). Luckily, finally, he gave in and tested his blood and drank the juice - and then almost immediately started showing signs of coming back up and out of the low. In the same minute he went from fighting me to a sudden awareness of what was going on - when he looked over at me and said "I'm acting stupid, aren't I?", the relief that flooded over me was palpable.

As he was coming up though, he told me something interesting - and important. He said that when I talk to him, or try to give him juice when he's like that, it's like 20 people being in the room talking to him at the same time. He said what he really needs at that time is less stimulation, because being that low is like "sensory overload" for him. It is too hard for him to process anything, and he said the best thing I could have done is left the room. Of course I said I couldn't do that, not when he's like that ... and then he agreed but said that I could have just left the immediate space, maybe sat further away and given him the time and space he needed to do it himself. It is difficult to think about doing this, but something I will think about and try to do appropriately in the future. Takes a leap of faith on my part though, I tell you!

Learning Point #2: TRUST
Something interesting that came out of this today too, was that before I knew about his situation, my husband was trying to wait until I left the room before treating his low - one of the reasons he got so low I think! Once he was back up again I asked him why? It became the same answer - he didn't want me to "freak out" or pressure him. However, we were able to have a discussion around it again that reinforced the fact that diabetes is a "team effort", and it takes trust. He needs to trust that I have his best interests at heart when my guidance during his lows becomes "intense" (as he perceives it), and I need to trust that he will be able to take care of things before they progress to that point. And I need to give him the space he needs to be able to do just that.

And I'll try, I really will.

Anyone else know what I mean?

12 comments:

  1. Last Saturday at 3:30 am I found my wife on the floor, sweating and non-reponsive. I grabbed her purse and checker and she was out of test strips. I went with my gut, guessed low and gave her a glucagon injection. This was a first for me and I was/am freaked out. I didn't even know if it was a sugar issue, and I was also worried I was sending her higher. I shuffled through the house, found some test strips, broke the checker in my anxiety, found another, 5-minutes post injection she was at 44. I worked to get her to swallow some juice and she finally came around. She doesn't remember it and I am resentful. It isn't fair to her, I know, but I don't know how to deal with it. My friends have no clue what to say, I have no idea where to go for support. Just reading this was helpful and I will check back again. Her answer... you knew I was diabetic. Thanks.

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    1. I find myself feeling the same way at times & even thought about recording my husband during a reaction so he could know just how scaryit is. Its a hard thing to do tho... In the moment no one wants to stop & video...especially thinking it could b the one u love dying!!! SO frustrating tho when they dont realize how scary it is!

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  2. Justin, thanks for your post. I'm sorry to hear about your wife's serious low episode, I know at a gut level how scary that is when it is happening. It sounds like you did all the right things, however chaotic it felt when you were in it. It had a positive outcome, which is the most important thing.

    The resentment part is harder. Diabetes is such a tough thing, because people with diabetes often have these kinds of lows because they are trying hard to keep their numbers in tight control, which always puts them at risk for lows. But it is what you want them to do, right? So it is a bit of a double-edged sword. And sometimes the lows just happen no matter how well the person is trying to "read" what will happen, based on what they ate, how much insulin they bolused, whether or not they exercised, etc., etc. I can't tell you not to feel upset / mad or resentful about what happened, because that wouldn't be fair to you. But I do hope that you'll talk to your wife about her thoughts on WHY she thinks this episode happened, and build some strategies together on how you can best avoid it next time. You (and she) won't be perfect, but communicating about it to each other at least ensures that you're starting from the same page with the same goals. Talk to her about your feelings - see if you two can be the team you need to be.

    Hope that helps, even a little. Check back when you can.

    Best,
    Ashley

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  3. Hi Justin, Ashley & everyone. I am a friend of Ashley's. I have had Type 1 for 50+ years. My wife has "saved" me many times (well, a few, but memorable). Justin, please realize that your spouse is embarrassed when she goes low. I sometimes get angry and combative as well, like Ashley's spouse. What I am angry about is the fact that I did not manage my disease well enough. I am pissed about that in my very low state. It's an embarrassment, which is why as the diabetic, you might not want your spouse to know your blood sugar. Believe me, nothing makes sense about your behavior at that point and reasoning doesn't work. I have asked my spouse to force sugar into me, and be patient. It takes time to come around. Since I have gastroparesis (a complication whereby you cannot absorb food quickly, caused by nerve damage caused by diabetes), I don't come back to life very quickly. If you panic, as the spouse, and act crazy, it just infuriates us, because our behavior (poor sugar management for the moment) caused your behavior (panic). Just take your time, be very matter-of-fact about it, and get something ingested, Ask what your spouses favorite syrup or food is. I like honey or caramel, so my spouse puts that on her finger and puts it into my mouth.

    I don't know anyone who is suicidal enough to cause their own lows of this type, so please realize that we do not try to do this.

    We have had "Firemen in the Bedroom" before, once or twice. Those folks know how to get you back into a safe zone, but rarely do they know much more than that. I came to with one of them taking a knife to my insulin pump chord! He said, "But it's putting insulin into you!" As a spouse, you undoubtedly know more about your spouse's diabetes than they do. Don't be bullied by them. Fight for your spouse.

    Many relationships with one diabetic often end in divorce because of the added stress and resentment. I have seen this many times. As Ashley said, my advice would be to talk this out. Talk about your feelings and hers. Ask her how she would want you to react, just as Ashley did with her spouse. It pains me to hear about the resentment. My spouse has said once or twice, usually just after an event like this, "I hate being married to a diabetic!" Of course, after we talk, we can move on. I reward my spouse in every way that I can for her efforts on my behalf. I hope your spouse does the same for you. Even though you may have known she was diabetic, I'm sure you were unaware of what you were bargaining for.

    I hope that this helps!

    By the way, you may want to visit the Behavioral Diabetes Institute website. That is an organization that addresses the psychological issues with diabetes, such as the resentment of lows. They may have advice or classes dealing with being the spouse of a Type 1.

    Best of Luck! Here's hoping for a good A1c!

    -Chris

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  4. When I wrote the initial post, I was pretty distraught. We did talk about how I felt, how she felt and we both went to her doctor and diabetic educator, which was followed up by her spending a lot of time on basal tests and some adjustments to her basal rates. All the fasting sucks for her and I greatly appreciate her taking the time to do that for us. Getting onto two months now without a problem. I probably still nag too much, but trying to focus that to the times she gets really crabby and lethargic. The perspectives and feelings of others here are priceless. Thanks for listening and thanks for the input.

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  5. Justin and Chris,
    Thank you so much for your posts. I know that this is an issue that spouses carry with us, and having a dialogue around it is a VERY good thing. Chris, thank you so much for sharing your insights and experience as someone on the OTHER end of the low ... too often our spouses are hesitant to communicate about what they are really thinking / feeling surrounding their lows, and it is nice to get your perspective. And Justin, I am so glad that you and your wife sought out support through your medical team - a good educator can be invaluable! When my husband and I experienced his first serious low event, we went together to an "intensive insulin management" course taught through the diabetes center here in San Diego. It was so helpful for us both to get the same information, and we connected very well with one of the educators who we continued to work with. It sounds like you both are on the right track - and yes, it helps to have some time to consider your role in all of this, and to figure out what you can do better for her as she tries to get her diabetes under control. I understand the nagging piece ... :) ... although we don't ever want to turn into the "diabetes police". I still catch myself doing that sometimes - VERY unproductive!

    Justin, I wish you continued good luck - please check back anytime. and Chris, thanks again!

    Best to you both,
    Ashley

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  6. Hi Ashley,
    I posted earlier, but maybe it didn't load correctly.

    Michelle from the behavioral diabetes institute gave me the link to your site. My husband has type I diabetes. It is comforting to know that I am not alone in the emotional struggles.

    I look forward to your sharing more experiences.

    Thanks

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  7. Jennifer -
    Thanks for commenting, and welcome. I'm glad Michelle shared my blog with you. You are CERTAINLY not alone with all of this ... I hope you share some of your perspective with us too - we all have valuable things to add and can all learn from each other.

    Take care,
    Ashley

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  8. Ahley, I just found your blog and have read a few posts and found it EXTREMELY helpful. I have never been able to find a resource for spouses of type 1 diabetics. I have been married to my spouse for 8 years now and have been through about every imaginable situation. It is good to hear you talk about your experiences as I share many of the same.

    My wife has been a trooper and we have had one child (4 year old boy) and are currently pregnant with twin boys! As you can imagine the pregnancy has thrown her sugars into a complete whirlwind. In the first trimester alone we were having low blood sugars to the point of her not being responsive 2X a week. We have experienced several miracles in the form of helping hands that have luckily been with her and helped her through her events.

    I live in constant fear and anxiety and despite my best efforts to explain I dont think she has any idea how much this effects ME. She is very proprietary with the disease and doesn't want anybody to "worry" about her, as if that is possible.

    In any case, I look forward to keeping up on your blog and hopefully starting a dialog. Thanks again for your time and effort in getting these issues out there.

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  9. Matt, thanks so much for your comments, and I am glad to see you here. I think your situation is somewhat unique since your wife is pregnant (with twins nonetheless!) AND you have a young child at home to care for. I can understand how anxious you must really be.

    I can only say how very critical communication between you and your wife is right now ... as much as you're focused on what she needs from you (and rightly so), she has to know what you need from her too. You two need to be on the same page so that you both are doing things to help the other. You help her with your love and support of her diabetes management (and pregnancy care, no small thing!), and she helps you by trying to do things to mitigate your anxiety. For my husband and I it is having simple rules, like making sure he tests before he drives, or when he's home alone with our children, and making sure he has supplies (e.g., juice boxes) around for a potential low. Preparation for the "just in case" is so very helpful for us.

    The second part of all that is ensuring that your wife is getting good care through her pregnancy - is she using a pump? Does she have the option of her using a Continuous Glucose Monitor throughout the pregnancy? How far along is she, and what do her doctors say about these lows? Be her partner on this and be her advocate - I always say knowledge is power.

    But I know that this will never take away your fear and anxiety completely. Keep talking with your wife the best you can, keep sharing what YOU need with her as well. Communication is so very critical.

    I know this doesn't even scratch the surface, but I hope that by connecting with others you see that you are not alone in this. Reach out any time -
    Take care,
    Ashley

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  10. I have been married to a Type 1 diabetic for 17 years. The lows have gotten me down, but perhaps more than the lows it's my deep resentment about them that is eating me up. He is in much better control than he used to be. He tests often and tries to stay below 150, but is in a very stressful work situation that's been driving his numbers up. We went through several years of 3xs a weeks nightly lows which would awaken me like the house was on fire, cortisol racing through my veins, I'd get him a banana, try to keep him in bed, feed him the banana, hoping he wouldn't choke, my heart about to burst. A lot of nighttime episodes that frightened me. One pass out at a restaurant. Never the EMTs to the house, but I've come close to calling them. Only once have I given him a shot of glucogen, but I've often struggled to get him off the floor, back into bed, reason him out of disorientation (which is impossible).

    What frightens me now is my own angry response. I'm burned out and watch myself over react to many lows (30-45) that don't occur in "dangerous" situations. I've punched him, trying to get through to him, frustrated beyond my limit. I feel terrible. We have huge verbal fights about his lows. He doesn't understand my anger. He is so combative when he's low. For instance, I try to dissuade him from figuring out what his nighttime shot should be when he's 44, but that provokes a huge conflict. He promises to be cooperative, but two days later it's the same. I fear that I can't be a supportive spouse because I'm losing it. Or maybe I've already lost it. Should I leave? He's a good man who is trying really hard, but the lows have just worn me out.

    Thanks for your advice.

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    1. I M in a similar spot. You posted many years ago. May I ask how you are doing now? Anon in N

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