I am 63 and was diagnosed when I was 50 and had already been married 20 years.
My T1 diagnosis was quite a surprise to everyone, but we’ve all adjusted.
My wife and kids have played virtually no role in my diabetes management. They leave it up to me to manage it, and are really not interested in it at all. My wife’s cooking has modified a little bit, but not very much (She’s Korean, and if I cut out the rice everything else is very good for a T1 diabetic).
@jbowler had a comment in another thread which prompted this question. Thanks @jbowler!
Dx’d T1 2 years ago at 66, but had T2 dx 10 years ago.
My wife is the reason I got dx’d, due to concern about lethargy, water consumption, and frequency of urination. She monitors my G6 with alarms for low and checks on me if not near by when goes off. She helps by using the apps I use to determine carbs for meals, and usually lets me know about 10 minutes prior to meals, if I’m not helping prep. She understands the meal needs and takes them into account, but we still go out and I fix her pancakes, French toast, and other things she enjoys as well. I count myself very lucky!
When I was first diagnosed 1.5 years ago, I ran bolus calculations by my partner and went through a going-out checklist (glucose tabs, glucometer, insulin pen, needles, etc) every time we went out.
Now I tell them when I’m low (we both work from home) and they get me some cut fruit, juice or tabs if I need them. They try to help me treat rationally so I don’t over treat. If I’m really low, I ask them what I should do (eat more, test or wait) because I know I have the urge to over treat.
They enjoy helping me change my site, but not the actual site application part, although they have gotten better (they don’t need to leave the room any more when I do it!).
They come to doctor and endo appointments with me and ask me what my blood sugar is when we’re out on a walk, suggesting a small tab if they can see I’m going low.
My wife of 41 years Kathy puts up with a lot as I do my own thing with meal quirks associated with T1D. I too was diagnosed late in life at age 57 and it scared the heck out of her as I lost 35 pounds out of 185 over the course of a summer before seeing an endo and starting insulin. So she’s always had an accomodating attitude about diabetes issues but not to the extent of butting in.
Some of the quirks we’ve added to our married life are: We buy different bread (I choose not to attempt to handle the carbs in fresh bakery bread) and we cook separate breakfasts (I’ve had basically the same breakfast every day when I am home, allows me to bolus and start my day on auto pilot). Other than that we eat pretty similarly. She still bakes and cooks often when we host friends or family and I study the recipes to make a carb guesstimate and decide before the meal if and how much I will have. She’s not bothered if I turn down one or more fresh cooked serving if I’m in the mood for lower carbs. When we travel its pretty much anything goes without regard to diabetes or carbs, I make an effort to not cramp her style with food preferences by just dealing with whatever wild carb guess I can muster up.
I have had type 1 for 20 years and have been married for 46 years. My husband has adjusted to my “Quirks”. We are very haphazard about food as most of our life we have had different schedules and that has just carried forward into retirement. So I am more likely to make food for the both of us, but we still eat a lot at our own schedules. He does know if he decides to make something like spaghetti, he will ask me if I want some and if yes, when can he make it to allow for my prebolus time needed. If he gets takeout, he calls when he has it in hand and ready to come home. He will periodically ask if I’m okay or if I need something if I’ve had a more lower low. I have certain foods for hypo treats that he never touches. He also makes sure I have a supply of shelf OJ all the time in case I need it and will bring home local oranges off and on because he knows I like to make fresh OJ or our local pineapple I love to use for trending low or to just eat.
We go snorkeling and that takes a little more work on my part and he has that down pat. I have to get out of bed earlier to combat with any DP left over and FOTF so I don’t overload insulin into my system and am done fighting a more stubborn high because I eat something in preparation for swimming. So he reminds me any sunny morning I might want get out of bed earlier. He also helps remind me to get a Libre on in time to warm up before we leave to make sure it’s working, otherwise sometimes I’m plopping it on before we go out the door and a few times it hasn’t started right. Those things affect him to of course because he wants us to go snorkeling. He knows spontaneously I get on my exercise bike and will reappear ready to finish a TV show or cooking etc when my levels are behaving. He knows if I am low to wait for answered questions as I don’t have the patience to focus on much. He pretty much sleeps through my alerts, although a few times I’ve tried to ignore it and it repeats and he’ll nudge me and go your alerts are going off. I know that of course, I was just trying to ignore it for a bit.
He is really good about my T1. But I can tell sometimes he really does not completely get it. I’m not sure someone without T1 can completely get it. But he deals with whatever he has too and makes adjustments as needed as long as he knows what he needs to do. But he pretty much figures most of the time I’m just taking care of it and doing what I need to.
Thanks for everyone’s comments. Seems like quite a range of responses and approaches.
It reminds me of a conversation I had a few months ago with a couple I met on a bench in Cambridge Ma. It was at an outdoor event called the “Head of the Charles,” which brings a lot of people out. The husband noticed that I had an insulin pump and asked me about it. I talked about it a little bit, and he pointed at his wife and said “she’s type 1 but she won’t get one”. The wife then defended her reasons, and I found myself in the middle of a discussion that seemed like it had been going on for years before I came in, and would go on for years after I had left.
So that reflects a much more complicated scenario, one in which two people in a close relationship differ on the standard of care to be applied in treating one of them.
I told this couple that it seemed to me that the decision rested with the patient, not the caregiver. (Although of course I felt the wife should get a pump …).
I love this conversation; something I have been thinking about a lot for the past week as I recently attended DIABETES CAMP FOR ADULTS (worthy of a separate post-- I will make one soon). I’ve come to realize that I really have not drawn in my potential support team as much as I could/should. My husband really is only aware of top-level diabetes things and I expect very little from him. (He does do all of our cooking and has made it simple for me to switch up carb intake in our meals when necessary and he is an incredible cook!)
But as I’ve gotten older, my T1 is changing and my low symptoms are more pronounced; insulin resistance is much stronger… management is challenging. I’ve been asking myself how I would like to involve my spouse in daily/long term management, and in general D contemplation. (I am a v private and independent person.) I’m not sure of the answer yet.
Thanks all for sharing these perspectives. It’s heartening that so many folks have partners who are supportive in ways that work best for them in terms of diabetes management!
I’m single and live alone, so on the one hand I don’t generally need to accommodate my eating or schedule to anyone else’s, and no one really questions my care decisions. On the other hand, there’s no safety net either. If I screw up badly enough I could be in deep sh*t, since no one is close enough to intervene with snacks or glucagon. I’ve solved this for myself through hypervigilance and rigorous data tracking, plus being lucky enough to wake up to my alarms.
(I’m aware there are services that can page someone if I have serious enough lows but given how many bad sensors and other non-hazardous artifacts I get, I’m not willing to push a bunch of false alarms on any of my friends.)
@Finn Interesting that you comment on your partner applying your device(s). I realized a month or so ago that I hadn’t involved my wife at all in this aspect. In a recent “episode” of disagreement we had on something else, she indicated her concern about not knowing how. So, on my next pod swap, I asked her to do it. For non-Podders, Omni’s are a manual attachment system; i.e. you peel off the backing of the adhesive patch and manually place it and sometimes the damn thing slips out of your fingers and part(s) of the adhesive patch stick to themselves or you in an “un-intended” configuration. Well my demonstration to my wife did exactly that…the thing slipped from fingers, contacted my stomach with several wrinkles (yes, I’m a perfectionist and it drives me nuts!). A good lesson for her to learn from my own dexterity challenges. She placed the next pod, but hasn’t shown much interest since then and still hasn’t done a G6 insertion, that comes next!! I’m REALLY looking forward to it! But seriously, for those that have entered “elder care” how have/are we supposed to find, train people that can assist as we become less independent and more reliant on others to attach and monitor us and our devices?
Ha! No way would I trust my wife to do that; Andy is totally mechanically inept. Andy has this observation of us both, a brit and a taiwanese chinese therefore taught to speak Hong Kong english. Together we can speak American.
Marry someone who is totally unlike you. You will argue, you will fight but together you can conquer any obstacle, or die trying.
I live with my daughter and she has follow on her phone and monitors as much as i do, and always asks me about meal, and will make separate meals if need be. I have thought her to use my controller, Omnipod 5, albeit after i had a severe low and could not figure out how to work and she didn’t know how to use, but knew enough to take my pod off of me. I had accidentally left in manual overnight at a high rate i use in helping bring down stubborn highs. Over the years she has saved my life 3 times finding me unresponsive and knowing what to do,