My husband Tony (who has type 1) and I watched this together, and to be honest it was difficult to watch someone else going through something so personal ... and something so familiar. Tony watched quietly and then he had some really interesting, and I think important, feedback.
In the video you can see the man sitting on the floor trying to work himself back into a normal state. He is refusing help, which of course just makes everyone want to help him more. According to Tony, the very best thing that we loved ones can do in that situation is to give our PWD space and some time to adjust.
He shared that when he is having a low like that, his brain slows down and takes five times as long to process even the simplest commands. And not only that, but when someone interjects repeatedly ("drink the juice"... "drink the juice"), it forces him to have to START OVER and reboot the process with every interjection ... so whatever progress he has made towards stabilizing (whether that means being focused enough to take the juice, or to tell me what he needs), the interjection causes him to have to start from zero again and work himself back up....every single time.
So instead of helping him, any continual prompts are merely prolonging the process, and possibly making the low worse. This was a huge "ah-ha" for me. And we've been dealing with this for 16 years!
He said that the best thing I can do during a low like that is to give him space and quiet. To leave the juice with him, accessible, and then leave him be. Stay nearby (obviously), but give him the time and quiet that his brain needs to put two and two together and try and treat his low by himself. He assures me that this will greatly shorten the process.
This isn't as easy as it sounds! My knee-jerk response to a significant low episode is to get involved, but I've learned over the years that my anxiety doesn't help anything. Obviously if Tony were incapable of drinking the juice or needed a more significant degree of assistance, I would intervene as needed. But this little bit of recent insight helps me, so that perhaps the low wouldn't progress to that.
Can any of you relate to that?
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my goodness, yes, I'm still learning it at 21 years, it is so hard to deal with it, I am trying to make myself leave the area so that I'm not tempted to do or say anything, the drama is just now worth it and then I feel sick myself...
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ReplyDeleteThank you so much for your post. My husband is T1 since the age of 7. His low blood sugars are somtimes pretty bad and I am always trying to figure out the best way to help without making things worse, It is a constantly evolving thing and I feel like I am constantly learning from each episode. Usually I am really patient, but sometimes I am not and I have learned that I need to keep my emotions/mood in check and just deal with the situation at hand. It has taken me many years to realize that no matter how well my husband manages his disease, lows and highs are going to happen and we both just have to deal with them. When we first started dating, I mistakenly thought that we could learn from each episode in order to prevent it from happening again! That was an exercise in frustration!! :) Thanks for blogging and sharing your story and your journey! It is nice to find people who have experienced similar issues.
ReplyDeleteAshley,
ReplyDeleteThis blog has made my whole night! I literally googled, "help, my spouse has diabetes". Found this blog and all of your posts(outside this chain).
My wife was diagnosed at age 3. We've been married 14 yrs. 3 beautiful kids. We are happy 95% of the time....the other 5% is brutal. Living with type 1 is like living with Dr Jekyll and Mr(or Mrs) Hyde. I can relate to all the good, bad and ugly
Thank you for the idea of stepping back and not repeating the commands like "drink the juice." Sometimes I feel like a Drill Sargent , instead of a wife.
ReplyDeleteWe have also found that peanut butter and maple syrup is a good way to bring my husband's blood sugar back up with some protein to keep it stable. (His nephrologist doesn't like the phosphorus in the peanut butter, though.)
So good to find this site and know that I'm not alone.
I experienced a traumatic episode with my husband last night - he had a massive hypo in the night where he started to be really aggressive towards me and I was really frightened. I'm used to helping him deal with his occasional hypo's well but this one was something different, it was like he had gone insane. I managed to get him some juice and left him with it in the room, I then hid in my son's bedroom until he came round a bit. Leaving him alone definitely is the best thing as I have found hounding him to "drink this" doesn't work. I absolutely love my husband who has managed his diabetes well since the age of 15. We have been together 15 years and I will be with him forever more - last night just shook me up a bit.
ReplyDeleteThank you all for your comments. I can relate to and understand each one. To the last poster - I know how scary that experience is, when your loved one whom you know so intimately becomes someone that you don't know. When my husband is in the throes of a serious low and loses his "personality", that's when part of me just goes into auto-pilot and sees it as something to just get through ... to help him get to the other side however I can (sometimes leaving the room is the absolute right thing to do). There have been moments when the Tony I know has been completely absent (mentally), but then as his numbers rise he starts to show signs of himself again... comes to his senses... the relief I feel when that happens is intense. I love him dearly too, so I know what you mean. Those episodes are very scary, and since we know that we are committed to our spouses and staying the course, it is important to be kind to ourselves after they're over. Treat yourself to something good today... you deserve it! And know that you're not alone.
ReplyDeleteI'm really pleased to have found this community. I'm new to this. Less than a year new.
ReplyDeleteI'm currently laying next to a man who is snoring. He's on his back, fully clothed, with his feet on the floor. I've just thrown away the candy wrappers from off his chest and I'm curled up with this phone in one hand and his monitor (telling me he's steady at 115), in the other.
He'd left the monitor at home accidentally when he went out to the bar tonight. It was making those angry noises and just as soon as I'd sent the text, a sweaty version of himself was at the back door, unable to get the key up to the lock.
At the moment, I'm dog-sick. Food poisoning. Have been all day. I've seen him drop like this before and worse, but I've always been able to jump up and help him. I can't even undo his boot laces or move him off the comforter right now.
So, tonight in my helplessness, I wondered did I really know enough about his T1 as I am comfortable with? Not a bit. I think actually the thing I've been calling a monitor is a meter? I don't know. I need to read other peoples stories and ask questions outside of my relationship. So I think this place is a good start.
His snores are a comfort to me on nights like this.
I hope he has since stopped drinking or the nightmare will continue!
DeleteThanks for your share. I think we can understand like no others what you were experiencing that evening. It's exhausting to deal with lows (emotionally and physically) when you're WELL, let alone when you're ill. I hope you, and he, weathered the episode okay.
ReplyDeleteLess than a year into loving someone with T1 is a delicate place to be. I think you're right, that getting educated on the disease is critical. Communicating with your partner is as well. I've said before on this blog that T1 is a team sport, and it truly is... but we can't assume we know what our partners want/need from us, unless we ask. Assuming we know is the best way to create conflict. Trust me, I speak from experience!
Keep sharing your experiences - I know that there are people who read this blog that "get it". Ask questions and reach out. Everyone's experience is different, but there are these interesting commonalities that many of us seem to share. Let us know how we can help. And hang in there.
Breaks my heart watching my wife learn to live with t1. She didn't get it until she was 36. Part of some auto immune disease. She talks about just wanting to die a lot. This has and is by far the biggest struggle I have ever had to endure but I love her and don't want to just walk away. We have been together 6 years now. She has been t1 for 5 of them. Good luck to all of you. Thanks for this blog.
ReplyDeleteHi Ashley,
ReplyDeleteJust found your post. Been 15 years with my beloved Type 1 husband and that's exactly how it is. When its everyday things go well, when you do a Foam Fest in the mountain you deal with lows for 24-36 hours and the 'I'm not thirsty'......and even without the fest, it's a tricky thing to deal with lows. Highs are different, not pleasant are your spouse feels like crap but is all there. Saw the video about the low......might make my husband see it as maybe he would understand that when its bad, I feel bushed the next morning. BUT kudos to our Tyoe 1 diabetics!!!
I am another in the middle of the night spouse commenter who has just dealt with my husband's severe low and am feeling very alone and trapped. Thank you so much for being here. It helps to know other people are out there dealing with the same issues. Some of you are amazing with the issues you deal with and daily support you give your partners. I am not feeling so amazing tonight. After 20 years of marriage to my husband with type1, I am questioning how I can go on. His night lows seem to be getting more frequent and take longer to resolve once I can get something into him - tonight I tried orange juice concentrate, oranges and honey. He will often refuse what I feed him once he starts coming around.
ReplyDeleteNow I've just had to leave him on the bedroom floor and remove myself to another room to give him some time to come around. I hear him up in the kitchen now so we made it... Unfortunately, we are not very close anymore, argue way too much, lack physical intimacy and I have started having anxiety for the first time in my life. It is so hard to figure out where the issues stem from. We have three beautiful boys. I worry about their chances for developing type 1. My work is stressful but I feel it is necessary so that we have a backup if anything should happen to his work. I feel like leaving, but besides our kids, how could I leave him to deal with this alone? So sorry, to go on like this. I am in a bad state of mind right now. Normally, we go about our days, full of work, kid activities and some of our own fun. We are so fortunate to have good health otherwise, make a decent living and don't have lots of other stressors. Hopefully after some sleep, I will be in a better place. Thanks for listening. "Anon in N"
I'm seeing this post long after it was made, after just having a brutal argument with my husband about how physical and combative he got towards me during a low earlier this week. I had hesitated to talk to him about how scared and nervous this last one made me because I didn't want to make his T1D about me, but I finally said something and our argument ensued. My biggest fear is that he is going to have a low so bad that he hurts me to the point that I cannot help him and his well-being is put at an even greater risk. I'm sure I'm not the only person who feels this way, but how do you handle It? I know that when he hits, smacks, kicks or bites me he isn't there, doesn't know what he's doing. This time just seems much harder to let go of. Would love some advice!
ReplyDeleteHi Terra,
ReplyDeleteYou're right, this post was written a long time ago, but I'm glad that you commented! I feel for you and your situation - this is not an easy issue.
I shared your comment with T1D husband, and he and I had a really interesting discussion about it. I wanted to share a few of our conclusions with you. Please remember, this is just my two cents - it is based on my own experience with my husband, which is of course different than yours, so please take it in the spirit with which it is meant: to relate and let you know you're not alone.
Okay, so firstly, as a partner of someone with T1D, his diabetes IS about you! When you live with someone and love someone with T1D, the issues become "family issues", particularly in those situations where your help/intervention is needed. Don't ever feel bad about sharing your experience in this with your husband and letting him know that it affects you as well. It affects ALL of us spouses! It's important for him to understand that.
So, about the lows ... my gut response (and my husband agrees) is that your safety in this situation is most important. If you aren't safe, then there is no way you can help your husband and both of you lose. It's like putting your oxygen mask on first when you're on a plane, and then helping people around you.
In order to be safe you may need to leave the room, and in all honesty, if my husband were to get combative to the point of biting or kicking, etc., I would call 911 for help. You are absolutely right that when your husband does those things in the throes of a low he is not actually "there"... and I'm sure that when he comes back up enough to be of rational mind, he would agree that your safety in the situation is critical. Don't be afraid to call for back up! These are very scary experiences, and sometimes calling in the troops is required. I have a friend whose T1D husband has had frequent, middle of the night lows, and she can't count the times she's called 911 for support. She was even going to write a book for spouses called "10 Firemen in My Bedroom", about her experiences, which unfortunately wouldn't have been as saucy as it sounds ;-).
In my experience too, sometimes my best efforts to help my husband in a low back-fired, and made the situation worse. I've learned that my anxiety/intensity never helps the situation, and my husband agrees. My husband's preference is when he's low (really low), to put a glass of juice near him and then leave the room. Let him try to get it down. If he hasn't been able to within 15 min or so, then further intervention might be needed. If things devolve or escalate and combativeness begins, even with gentle encouragement, don't be afraid to call for backup! You don't have to do this alone.
Of course the best case scenario in all of this is for you husband to be able to prevent these severe lows before they happen! Is he working with a diabetes educator or using an insulin pump or CGM? All of those have been incredibly helpful for my husband in keeping the lows at bay.
Terra, take care of yourself in this! You have every right to, because it IS about you too.
Ashley
I have been living with T1 hubby for about 4 years now , his low scared me sometime not towards me but he would just have no idea what was going on or where he is at . This morning I woke up , make the kids breakfast and heard his monitor alert as low alert , so I got juice for him , try to wake him up , he keep cover himself with blanket and to me it seem like he want to be left alone , I went back to check on him every so often , then I have to take the kids to school then came back home , he drank the juice and I told him what was happen , then late afternoon , he was coming out from no where telling me how upset he was when he think about it , he is upset because I left him with the juice to take the kids to school , he said he could die from this and I don't care about any of this , them it turn to the big fight , we have an emergency kit in the fridge which I was totally forgot about it because I have so much to take care of during that time . It's pretty hard but I know we will be okay , thank you for the blog . I feel much better to know I'm not the only one who go through this
ReplyDeleteHi..wondering if you are still blogging about your experiences? I have a husband with type 1. He has had it for 27 years. We've been together for 18 years. It's getting harder and harder with all the emotional craziness during the lows and highs. I am trying to hang in
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