Welcome back at last to the Diabetic Partner Follies, a series of guest posts from the Loved Ones and partners of us PWDs (People with Diabetes). Wow, hearing about this disease from the other side is not pretty. Not pretty at all. Please read this latest heartfelt contribution from a partner who is, well, … just depressed about her family’s state of affairs.
Hi Amy,
I just found your website and cannot believe that there actually is one for partners of diabetics. People don’t realize how much diabetes affects the partners and can be very flip or glib about it. They just think they should buy an insulin pump or take better care of themselves, it’s not that simple. My sob story is a very long one and I appreciate the audience.
My husband and I have been married for 20 years. He has been a type 1 diabetic since before we met. To make a long story short, he has had more low blood sugar episodes than I can count, seizures in the middle of the night, paramedics coming over to help out because he’s too big for me to control, all kinds of wonderful things. In the last month we have been through 2 major episodes where he got up at night and hit the floor, hitting his head in the process.
Needless to say, any kind of loud noises at any time of day make me jump. But last week’s episode was the icing on the cake. We were at a ceremony for my daughter’s lacrosse team and were waiting for food and I could tell he wasn’t feeling too well. He started shaking visibly in front of everyone. I quickly managed to get some pizza and thank the Lord he didn’t have a seizure in front of everyone. He actually listened while I nudged him by the tables to sit down. My sweet, dear daughter took it in stride (and by the way I had to also monitor my younger daughter to make sure she was doing alright).
I’m depressed because this happened at my daughter’s ceremony. I’m depressed because it’s really really hard sometimes. I know it’s very hard for him and he has to live with it, but there are silent witnesses to these events and only the strongest can truly bear it. I’m depressed because I have to be a caretaker. I’m depressed because these things affect my children as they grow up. It’s not getting easier as he gets older, and I am depressed because his mother went through the same things with his father and now I feel like her.
Thanks for letting me vent, it was very cathartic. Here’s to all of the silent witnesses and helpers that struggle with our loved ones and their diabetes.
Kari Osier
Thanks for your honesty and openness, Kari. It frightens me to think my family might have to go through this someday. And I do wonder what the community here will have to offer you by way of support…?
I am a diabetic husband and 50 year veteran of the diabetic wars, After35 years, my wife could have written this note. The details might be different but the depression and angst would be exactly the same. Just know that it tears me apart every time I do something stupid. Is he taking the newest insulins? Novolog has changed my life. Can you afford 7-8 tests per day? Again, going from 5 to 7-8 has made a huge difference. What is the glycohemoglobin? I see people talking about values in the 6′s but the only way you can do that is to go low, a bunch. The low 7′s are much easier to achieve and will generally protect one from the nasties of blindness etc. And finally,how much do you can you talk about the coming hours? My wife is always asking, have you checked your sugar? Do you have a plan? What do you think is going to happen next? Do I resent the questions? May be sometimes, but it sure makes her life easier.
When I first started reading this post, I thought my ex-wife had posted it. The specifics of the low blood sugars were different, but the rest of it could have been describing me. Unhappily, for me, it is too late. The toll of my lack of diligence cost me my marriage (really no other way to put it). My ex got to the point where she felt she was taking care of two children — one still incapable of taking care of herself because of age, the other seemingly unwilling.
Kari: Let your husband see your post. Try to find a time to talk about your feelings about taking care of him, and try to be supportive of his efforts to get control of himself. He also has to learn how to be appreciative of you. It took me a long time to learn to be appreciative and to learn the diligence necessary to take care of myself. I’m not suggesting that you should leave him — never. But we diabetics need to understand the impact that we have on the people that care for and about us.
Yes, I resented her telling me I was low all the time. But, she was right nine times out of ten.
I think part of the battle against diabetes is feeling sufficiently empowered that we can do something about it. For a long time, I felt I could do nothing significant about it, and all the lows were just part of the bargain. As my marriage deteriorated and ultimately ended, I came to realize that I cannot cure my diabetes or make it go away, but I can do things to put me in control of it, rather than vice versa.
Sometimes, all we need is a wake up call. I got mine, but it was too late. Hopefully, your husband will get his. It will be to everyone’s benefit — you, your daughters, your family and, most importantly, him, because he will have better quality of life to share with the people he loves and that love him.
Solve the problem: don’t eat carbs and use a CGM. That is the only way.
Your post has really given me pause to think. I’m the one with diabetes, and my husband deals with me and it very well. In 15 years as a T1, I have never passed out, but that doesn’t mean I won’t. You just made me realize that I need to think more about HIM when I’m making choices about whether I treat a low with something yummy but not as potent or something predictable that will get me back up as soon as possible…about whether I try to stay awake after treating a low instead of going back to sleep…about whether I try to do better with my food choices….about whether I take my meter on a run or leave it at home….about lots of things. As far as your situation, I would have to know more about your husband’s self care to express much of an opinion. There is a hard-to-detect (by others) line between what we can control and what we cannot with this disease. If he is not testing frequently and doing his part, I would offer the possiblity that he may also be depressed. Or perhaps he is actively working to control his diabetes, and having difficulty with varying times of food absorbtion, etc. I don’t know, so certainly will not judge. But thank you for sharing your perspective so that it gives us all a reminder that diabetes has an impact not just on us, but on our loved ones.
It sounds like a Continuous Glucose Monitoring system could be a real lifesaver for you and your husband. I would imagine that you could have success getting one covered by insurance, with your husband’s history of severe hypoglycemic reactions.
In the place of CGMS, perhaps testing more often would help your husband catch his blood sugar before it gets too low? Frequent testing really does give me piece of mind about what my blood sugars are doing at any given time.
Good luck!
I have often said that I think my husband suffers as much as I do, just in a different way. He watched as I was dying for a year and a half without a diagnosis..and then he gave me a sponge bath, a shower, and many hugs and Kleenexes as I suffered through five days in the hosptial after my type I diagnosis and a serious bought of DKA. He has given me shots, treated my lows, driven me to appointments, encouraged me, picked me up off the floor after I fainted and hit my head on the wall, etc.
All I have to say is this: Thank God I have my husband. I wouldn’t be able to manage this disease so well without him.
I had never thought to see my diabetes through my husbands eyes. Your story has opened my eyes to see this all in a whole new light. It must be so hard for him! I am 25 and have had diabetes for 10 years now. I have nerve damage throughout my body but what affects me the most is the never damage in my digestive system and heart. Every time I eat I get really sick. I am used to living my life around what I eat and when I eat, balancing my activities based on if I’ll feel sick. But more poor husband! We have been married for 6 months and he never complains. Never complains about all the things we can’t do or the invites we turn down because I dont feel well. Thank you so much for helping me to appreciate him in a whole new light! I hope you can find the support you need through everyones feedback.
Google “Bernstein diabetes”.
I have had Type I for almost 36 years, and have been very diligent about my blood glucose readings. I used to test like a fanatic (around 15 times per day) and I now use the MiniMed Paradigm 522 with CGM (continuous blood glucose monitoring.) The sensors are expensive ($35.00 per day) but I use them for close to 14 days – rather than 6 days.) If you want info on how to extend the life of a sensor, I’ll be happy to give it to you. It sounds to me, though, that your husband either has gastropareisis, which makes his food digest strangely and at unpredictable times, or he is using a primitive set of insulins (like NPH and Regular) rather than Humalog or Lantus. The best thing would be a pump, but only if YOU would learn how to use it, too, and of course he’d need to be responsible.
Good luck.
I’m not entirely sure what the purpose in recommending Dr. Berstein’s method of treatment or a low-carb diet is other than to provide an extreme lifestyle for someone who might not even be taking care of his diabetes at the normal standard of care (testing frequently, taking injections, counting carbohydrates). That method of treatment is *not* the only way to take care of diabetes properly. It sounds, from this limited anecdote, that he is hypounaware from years of having diabetes and is unaware he is low until someone has to rescue him. Previous recommendations for a CGM sound much more realistic than putting him on a low-carb or strict Bernstein type of control, which would be impossible considering his level of current control. I think a CGM would help catch a lot of these lows that sneak up on him because of his hypounawareness. Until then, frequent testing – and I mean frequent, like 8-10 times a day – is the best way to catch a low because you can see patterns and trends that will allow you to make adjustments to medication.
I soooo agree with Allison, but was a bit afraid to post, as some fellow diabetics, make it sound so simple in their remarks/comebacks when I state how hard it is for me and others to have a good result to my current diabetic treatment of the day.
I have been Type 1 for 41 years and it is just not that simple as following the Dr Bernstein method or even using the CGM.
Every day is different with diabetes and it is sooooo not an exact science. I don’t feel we can just blame one thing or offer one suggestion and hope things are fixed. I have also used the CGM and have had horrific outcomes using it on any given day.
I was off last week on vacation and had relatively good numbers, but I also suffered some severe lows as my basal setting had been recently changed. Today back to work and had finally conquered my lows from last week with another basal change and bam my first day back at work I was high all day and guess what I low carbed today as well.
It is too hard of a disease to offer a one size fits all fix, and the hope this will lead to a solution to fixing the significant other’s grief as well. I so feel for my husband at times, but from some of his reactions/responses, I also realize he will never get how I cannot always contol the outcome and this also holds true for my siblings and close friends.
I know that was an emergency but pizza isn’t the best food to give for a low. It doesn’t work fast enough. You should ALWAYS have glucose tabs handy; they work immediately. Even though your husband probably has gastroparesis and hypo unawareness, those lows CAN be avoided with more frequent testing. Also, as someone else mentioned, NPH and regular insulin make good control very difficult because of sharp and irregular action curves. He needs to be on Lantus or Levemir for basal and fast-acting NovoLog or Humalog for meals with dose based on carbs eaten at that meal. Done properly, this can significantly lower his low episodes.
the statement made earlier that there is no one size fits all when it comes to this disease is so true. My perspective? Well I am a type 1 who is married to a type 2.
we both know what we should be doing and do try to help each other out.I feel I have the easier task of helping him than he does me. Not because our diabetes are different types but mainly because of the complications.There are so many factors that come into play on a daily basis. Food, meds,activity,stress, and any complications that might be going on.
The most difficult complication that I seem to deal with is the gastroparesis. All the testing in the world can never control the slow digestion of food. what works what doesn’t, what moves in your system, what doesn’t. It gets very overwhelming. Aside from CGM’s, pumps,diet changes,and/or more frequent finger sticks,communication has been our best tool.
talk to him about how he feels when these things start.I am very hypo unaware,but, I do tend to get this veryweird feeling,likea hot flash,but only on my forearms.I know when I feel this I am going low. When you are helping him treat a low,try to observe if he tends to do something everytime that lets you know he is headed down. My husband says he can always tell when I am going low because my voice changes from perfectly normal to sounding like I am drunk. He has never been wrong.
carry glucose tablets, get a glucagon kit, get those little carbo shooters I like to call them to treat him fast.
Let him know how you feel,I never knew how scary it was for him to find me in the middle of a low and trying to treat me until he told me what he sees. I assumed he would just give me sugar ,get my sugar back up and we would go about our day. It is not like that at all.All of this becomes sucha part of living with this everyday that we all at some point forget that there are other people involved who love us and want to help us and are just as scared as we are. Diabetes is an emotional and physical rollercoaster,we may think we are a single rider,but in reality,your family is stepping onto this ride togethereveryday. Let him know that ,let him know he is not alone. Let him know that you are feeling alone in this.When my husband told me how he feels it really opened my eyes to the fact that I am not alone in this and he is trying to help me and watch over me because he loves me.Be honest with him ,You, will feel better yourself.
I’m sorry you have to watch your husband fumble through this. It must be hard to see him go through this and not be able to control it.
I agree with some of the other commenters. There are all kinds of ways to effectively treat diabetes, and your husband needs to find one that works for him. It sounds like he needs a diabetes shake up. Whether that comes from a change in diet, different insulin, new technology, a new doctor (what does his endo think of all these paramedic visits?), or even a new record keeping system.
I went through years of unnecessary overnight lows before a new doctor made a simple change in my insulin routine. It could be that your husband can make things easier on both of you with some tweaking. Diabetes is always changing, but in most cases you can find some sort of balance. It shouldn’t have to be this hard.
If nothing else, one of you (really your husband) should be carrying juice or glucose tablets or candy at all times so you don’t have to depend on whatever food is around you. And the same about keeping something by the bed. At least this way you might be able to prevent some of the worst.
LBLICE,
Thanks for your rollercoaster analogy. It stirred up a lot of emotions for me and sparked this post over at Trusera.
http://www.trusera.com/users/bev/stories/the-whole-family-rides-the-diabetes-hypo-rollercoaster
I wish I had words that could help. I grew up watching my mom go through the same horrible lows and nighttime seizures – I knew what a problem it was when I realized we were on a first name basis with the local fire department rescue team, courtesy of all those late night 911 calls. I remember how terrifying and depressing it was to watch. She is now on a pump (has been for many years) and does much better. In her case, taking advantage of the best technology available really helped. I wish both the best, and I’ll keep you in my thoughts. In the meantime, I hope it helps to know you are not alone.
A CGM is handy; if he is willing you can check it too to give you peace of mind. I have been able to prevent a lot of lows by catching them on the way down instead of when they are already there. You can also check out Dogs4Diabetics–they train dogs to detect hypoglycemia.
Best wishes to you and your family.
-Anne
Thank you!