How Do Our Spouses w/ Diabetes Feel About Us?

I just stumbled across this video from dLife, where PWDs are interviewed about how they feel about their spouse's (usually well-meaning) intervention into their daily diabetes management. I find it really interesting! I think that often our spouses are not necessarily that forth-coming with how our efforts make them feel...

Take a look and see what you think... any of this sound familiar in your house?

Rude Awakening

There's nothing that snaps you awake at 3am quite as quickly as discovering that your spouse / partner / loved one with diabetes is in the throes of a serious low.

It happened to us just the other night. For some reason I woke up at 3am, and in attempting to get my husband to move over (he was like a dead weight, which should have been my first clue) I reached over and found him drenched in that cold sweat ... hands, legs, neck, arms, everywhere. And it was bad, a LOT of sweat... which isn't normal for him, even when he's low. I was suddenly wide awake, on alert, realizing that he needed my help.

My husband has had type 1 now for 14 years. Through these years we've had our share of diabetes highs and lows, but luckily only a handful of really serious episodes. I realized in an instant the other night that this was one of those episodes.

A few years ago I would have completely panicked, and wasted time trying to get him to test his sugars (which he was completely unable to do), or talking AT him to do things... "drink the juice", "test", or peppering him with questions as to how he was feeling. But recently I've learned from him, particularly from his last serious low, and I kept all that he told me in mind as I navigated this critical situation.

Firstly, I kept it calm and quiet. My husband shared with me after his last serious low that when I talk to him during those episodes it is as if 20 people are talking to him at once, and he cannot process what is being said. So instead, I got up and went to the kitchen for juice, no words spoken. I came back to bed and simply held my husband's head up and supported his shoulders so that he could drink the juice without spilling. The only thing I said to him (quietly) was "you need juice", and then sat behind him, held the glass and fed him sips of juice every few seconds. I had to keep him upright because he wanted to just slip back down into a sleeping position, but I made sure he could still drink. As long as the majority of the juice was going down, and I knew it would do the job and I wouldn't have to hunt for the glucagon. I did this for about 30 minutes, quietly and calmly, trusting that he would slowly come back up ... which he did.

The one thing I also realized is that I had no idea how to turn off his insulin pump. I didn't want to start pushing buttons because I certainly didn't want to end up bolusing more insulin into his system. Short of ripping his site out, I didn't know how to stop the insulin! This was a rude awakening as well - that as prepared as I thought I was, I had overlooked this one important factor. That was the first thing I had him show me the next morning - and I am now an expert at suspending his pump. But it reminded me of the things I forget to know, until I'm in a situation where I need to know them. Not good - better to be prepared ahead of time and save yourself the stress.

Luckily my husband came back up and came to his senses - by the time he tested he was at 87, definitely a comfortable zone for me. Within an hour we were both able to go back to sleep knowing that all was well.

What I find interesting though, is that even though everything went smoothly and turned out well, I've still been processing the episode for the last two days, going over it in my head. I think the thing that plagues me the most is the "what if"... what if I hadn't woken up? what if I had been travelling and wasn't home? (we also have two small children, so this is of course a concern) what if it had progressed further?

The funny thing about these episodes is that they are critical in the moment, but once the moment is over, they are done. You go on with your life. But I think what I realize as I write this down, is that the episodes are over physically, but not emotionally. These episodes stay with my in my psyche, as I'm sure they do with every other spouse out there. It is difficult to see your loved one in such a state of need, and for some that may wear them down.

But I choose to look at this a different way. What I really see it coming down to is partnership. I suffer from migraine headaches - the kind where you're completely incapacitated and unable to function - and every time that I've had an episode in the last 20+ years that we've been together, my husband has stepped up, and taken care of me, our kids, and everything else as I've needed him to. His lows are similar to me - sometimes he needs me to step up, and when he does I am there. It is part of our partnership as a couple, recognizing that we truly need and are there to look out for each other. It's what helps me keep these emotional memories of his serious lows in check.

The lows are what they are. The experience of supporting him through one is what it is. But how I choose to frame them in my psyche is up to me. And you.

Fact of Life #5: Denial (No, not theirs, yours!)

People talk a lot about "denial" when they talk about diabetes... about how the PWD in their life doesn't take care of themselves, how they pretend the diabetes doesn't exist, how they do whatever they want around their disease... and so on, and so on. We've heard it - and talked about it, with friends, family, doctors - many times before.

But how many times have we actually stopped to look at the flip side of that... at the fact that we as spouses, partners, loved ones of the PWD may actually be living with a form of denial all our own?

I think it is true of anyone who lives with and loves a person with diabetes, that there are many moments of wishing that the diabetes didn't exist or was gone magically (poof!) one day. For me it is a matter of wishing I could take it all away from my husband, so that he could go back to those carefree days where he wouldn't have to think about, worry about, or deal with those diabetes ups and downs on an hourly basis. Of course I don't share this feeling with him (until now, that is!), because unfortunately - as we all know - just wishing the diabetes was gone doesn't make it so... or make it productive, so I just push that notion back under the rug from whence it came.

But I wonder sometimes if that desire to have the diabetes "gone" creates a unique type of denial for me as a spouse ... something I would term the "No-Big-Deal-ness" that I find myself feeling or communicating to other people around my husband's diabetes.

As a spouse, I think that a certain level of "denial" of the disease is healthy ... in order to keep the diabetes in its place and not allow it to rule, or define, our lives. However, I've also come to realize that there are times that I find myself in that different kind of denial... the one where even though I recognize (of course) that the diabetes is there, that it is not going anywhere, that it is a fact of our lives, I still find myself thinking "it's not so bad ... and because it isn't bad now, it never will be. Ever, ever, ever."

I know I am one of the lucky ones - my husband has had type 1 now for 12 years, with no complications and only a handful of serious low episodes. He is very proactive in his care - wears a pump, checks his numbers many times a day, counts his carbs, sees his doctors and has his A1c checked regularly - and I am always awed and grateful for how well he does all of this.

In a way I think his good management of the diabetes has facilitated my unique form of denial ... not to put any blame on him of course (who wouldn't want a spouse who takes care of business?!), but I almost feel like the fact that his diabetes has remained largely "invisible" has allowed me to lull myself into that "no big deal" denial.

For others whose partner's may not be taking as good care with their diabetes, and may in fact be in denial of their own disease, it may be a realization that you too are somehow a "partner in crime", abetting your partner's denial with your own participation in, or encouragement of, things that are less than optimal for your loved one's daily management... that regular trip to the ice cream store? Getting upset with your partner with the disruption that checking blood sugars or treating the diabetes makes in your daily routine? Making it difficult for them, and for you?

Regardless of how we got here, I'm starting to think that this type of "no big deal" denial isn't a great place for us to be.

People have shared with me that one of the worst experiences for them as a spouse of someone with type 1, is finding themselves "unaware" and unprepared for a diabetes-related event. For some it has been the onset of a complication where there didn't used to be one - for others, the first call to the paramedics for a low that couldn't be reversed. And for others who have spouses who have lived with diabetes for many years, it is the worsening of an already existing complication to the point where it truly begins to become a part of their daily lives in a way that cannot be denied.

How do we prepare ourselves and open up the "can of worms" of feelings around our partner's diabetes that our current denial - our it's "no-big-deal-ness" - protects us from? How do we come to terms with our loved one's disease and give it a place in our lives... a place that respects it for what it is, yet empowers us to stay in control of our emotions and reactions to it?

Here is my take on it - I encourage you to comment and give me yours:

1. Be realistic - Get the information you need to know what you're dealing with. Where is your partner's diabetes at? What challenges do they have right now? Learn as much as you can, both from your loved one as well as from others in your diabetes network, and let that frame what you think (and what you feel) about where the diabetes is and is likely to go in the near future. In this case, what you don't know can hurt you (and your partner), so now's the time to get real. It's the only way that you can be on the same page with your partner.
   
   
2. Get angry or sad if you need to - Once you know what you're dealing with, it's natural to feel sad or angry or both if the information is not what you were hoping for. You may run the gamut of emotions - from fear, to loss, to anger at your partner, to relief if the news is better than you expected. Regardless of what it is, I think it is critical to really stop and feel the feelings you have around this. You may or may not choose to share them with your partner - however, it is important to find someone to talk about it with, to get it out in the open. Empower yourself by acknowledging and addressing your feelings head-on. Burying your head under the rug never helped anyone!
   
   
3. Accept it - This is a biggie, and it takes time. The goal is to get to a place where you feel "okay" with the truth of your spouse's diabetes, and you know your role and are comfortable with it. You don't feel the need to downplay (or dramatize) the diabetes, but are realistic with where it is and where it is going. You recognize the possibilities (good and bad) in the future, and have thought about how they might affect you (and how you might respond). You've come to a place where the diabetes just is in your life, and you're okay with that.
   
   
4. Partner Up and Move on - I think that more than just accepting our loved one's diabetes, we need to feel the ability to partner with them and move past it. This may mean figuring out a way to have the disease in your life, but not having it BE your life.... having those life strategies and "plan B's" that you can implement if things go south, and not being unalterably shocked or affected if diabetes-related events surprise you. It means having some resilience, together as a couple facing the disease and moving forward. Living well with the diabetes ... both of you.