Spouse of T1D


(michelle) #1

I have seen a lot of posts from parents of Type 1 DM but I am wondering if there are any spouses out there. Or even any advise from diabetics on how to best be supportive for a spouse with DM.
My husband was diagnosed with adult onset type 1 DM about 6 months ago now and it has really affected our lives. As far as his health, he is still in the “honeymoon” phase and not needing insulin yet but that feels like a threat looming over our heads. He has become very depressed and angry and I dont know how to help him. I try to stay positive but that seems to anger him. I have gone to all his appointments with him. I am eating all the foods he is eating and we have both completely changed our eating habits. And I absolutely do not mind doing this at all. But he seems to be angry all the time. I do now know what I should do other than suggest therapy. I am worried that this is damaging our marriage. Any advise from people who have been through this would be greatly appreciated.


(21 F Diagnosed Feb 2012 ) #2

Hi Michelle! I have T1D myself but my fiance is my sole support for it and has been since High School. My family has been pretty much non-existent in my life as a diabetic and they are all very under educated on it. On top of the diabetic mood swings which come with high and low Blood Sugars I am diagnosed with Bipolar Disorder.(which means I’m mood swing city lol) My mood swings are really hard for me to control and I become very mean sometimes and say nasty things to my partner that I would never dream of saying when I’m feeling more “normal”. He is incredibly understanding about it. His normal reaction when I scream at him and call him a name is to hug me and then leave me alone to cool down in another room. When my head clears up I always apologize to him and feel horrible about my actions. Me getting mood swings is probably never going to change and I will always be battling my emotions. I think if you are able to you should aim to educate yourself as much as possible on T1D and be there for him no matter what(as long as he does not get violent or hurt you) while also understanding that getting angry at his situation is a normal reaction especially if he is recently diagnosed. Giving him space when he is angry but also letting him know that if he wants to talk you are there for him might help out. Therapy and getting him to talk with other T1D will also help tremendously. I was never able to talk to other T1D and it was really hard going through 7 years of this disease without anyone who knew what I was going through and it made my life %100 harder.


(Dennis J. Dacey, PwD) #3

Hi Michelle @michellealt ,

I hear you and I think I understand what is happening to you as a couple. Give it a “little” more time and also let his doctor know - some counselling may help.

I’m not a spouse of a PWD; I have had TypeOne for 60+ years and have been married for over 50 years - yes, to the one and only woman. I suggest that you say directly to your husband that you are there for him anytime, all the time but that you will NOT interfere with his management unless he asks. And subtly tell him that you have been deeper involved in studying and learning about diabetes than he has been. He may be in his funk because he thinks he messed up by getting T1 [not true] and that he is less of a person because of “my affliction”.

It is really in your favor that you and he eat the same meals and that what you eat is appetizing and good for his health and yours; a person with T1 is not really restricted in choice of foods - do stay away from “diabetic foods”. When I was growing up, I ate at the same table and ate the same foods as my six siblings and my parents - no special treatment after my first few months with diabetes.

mood swings could be because of diabetes and dips in glucose levels and he may not even notice - I know that I don’t; yes it irritates my wife when she tells me that I wasn’t acting myself and I respond that “I didn’t do / say anything”. You didn’t mention for how long you have been married to him, but I suggest that you talk straight with him and not pussy-foot about him just because he has diabetes. What I’m saying, both of you must pull together in the same direction. So set a few goals for him - reasonable goals to which he agrees.

Do not let diabetes adversely affect your marriage and don’t let him use diabetes as an excuse to mess up his life, your life or his career. Despite my very brittle diabetes I was able to work over fifty years retiring when I reached my 70’s and often got the perfect attendance award and employee of the year award.


(michelle) #4

Thank you so much to both you for responding. I never realized that mood swings went along with sugar fluctuations. That is helpful to know and does help explain some things. Thank you again for the support. It is helpful just to be able to hear from other that have made it through.


(Jason Taormino) #5

Hi Michelle,

I got out of the hospital two and a half years ago. Speaking with other T1Ds has been life changing for me. Happy to speak with your husband. 530. four hundred. 8854. jason at taormino dot org. Also, JDRF has a mentor program that connects new type ones and experienced type ones. I am in my forties and my mentor is in her twenties. I was reluctant to ask for a mentor but it has been extremely valuable.

Jason


(Suzanne) #6

Michelle,

I was diagnosed last year, at age 55. It was devastating to me, and I was an absolute mess. Like your husband, I was in the honeymoon period for a while. I was not on insulin, I had mood swings from the fluctuations in my BG levels, and I was severely depressed. The looming fear of what my life would be like when the honeymoon period would eventually end and I would be dependent on insulin for the rest of my life, the fear of complications, the fear of lows, and knowing that things can only get worse was excruciating.

Fortunately I had a wonderful endocrinologist. She set me up with a CGM so that I could closely monitor my BG. After several tries, I also found a good therapist.

I also recently attended a 4 day “Mastering Your Diabetes” class at the University of Miami (spouses are encouraged to attend too). The class has made a huge difference for me.

My honeymoon period ended a few months ago. Fortunately the class gave me the tools and guidance I needed to use insulin with confidence. Over time my BG has become more controlled, and both my mood and outlook have improved.

T1D is a very hard diagnosis to come to terms with, especially if it is totally unexpected, as was the case with me. Your husband is very lucky to have you in his life. Please know that he does appreciate you and your efforts to support him, even if he may not always show it.


(Jm1977) #7

Hi Michelle,

It is great that you are using the boards. My husband and I have been married for 15 years and I have had T1D for about 3 years. When I was diagnosed I read everything under the sun although I’m sure some people react to their diagnosis differently and may be afraid to read about it. My husband has been very supportive although sometimes he gets frustrated when I’m low or high (not as if it’s purposeful) but I know he worries. It irks me when I’ve read so much and know he hasn’t and he’ll dictate to me what I should be doing (especially when I’m low) despite the fact I’m trying my best in the first place. Sometimes it’s just nice to be listened to, an uh mmm in agreement rather than a knowledgeable answer.
I’ve found that sometimes T1D can be frustrating because when you have a rollercoaster of sugars and you can’t figure out why it gets you down. But most of the time I’m not like that, just every so often it annoys me.
It is early days and you seem to be making changes together which is great. It takes time to adjust and that’s ok.
Also check out Think like a Pancreas- you may both find it helpful. I think my husband looked at mine.

Wish you both the best.
Jo


(Sandy) #8

My wife was diagnosed type 1 almost 3 years ago. As this was so late in life, it has been a very hard adjustment for her, and I do everything I can to help. I try to eat the same, and our life has changed a lot. She was a marathon runner and always very active, and this has really been a struggle for her. I am her advocate for all things medical that I can be, helping her navigate the mess of prescriptions, health care, insurance, etc. The mood swings can be hard, and it’s really hard when you haven’t done anything wrong but you still have this disease and you don’t know why. It has definitely strained us, but she is the love of my life, and was always my rock, so I try my best to be her rock now. Life throws you curve balls, you just have to take it one day at a time and think about how you would react if it was you. For me, I don’t know if I could handle it. My wife is the strongest and bravest person I know, and most people just don’t understand what we go thru on a daily basis just to try and live a"normal" life. Hang in there.


(Dennis J. Dacey, PwD) #9

Sandy @Sandimann,
You are doing everything right - and I say that from my prospective as a guy who has been married to the same woman for over 50 years and all that time I’ve had diabetes. You are there for her, supporting her and willing to ready to jump into action whenever and wherever she wants you - let her know this and also tell her she is to let you know, directly or indirectly, when SHE WANTS you to assist her.

Diabetes in itself should not stop her from her wanting to run marathons; there are many teams of marathoners made up of Persons with Diabetes [PWD]… Check the Events tab above and you may find one in your area.

My 60 years living with diabetes tells me that we, PWD, can do everything we want - diabetes should not limit the range of activities. Now you Sandy, keep up your awesome support and love for your life!


(michelle) #10

Reading what you wrote sounds so similar to what my husband is going through. He did get a CGM from his endo but I had to hide it because the sight of it was causing him anxiety. We haven’t discussed it again since then. Right now I am just waiting until he is ready. I am interested in the class that you mentioned. Is this something you recommend before he starts insulin? or is it more useful once he is already at that stage?

Thank you so much for your help. Michelle


(Suzanne) #11

Michelle,

When I was first diagnosed I was such a mess that I cried all the time - especially when I was alone. Although I tried to read about T1D, I was so overwhelmed and depressed that I could not read more than a page at a time - then I had to put the books away. Looking back now, under the circumstances, I do not think attending the class so soon after being diagnosed would have done me much good.

I found a good local JDRF support group which meets monthly. Speakers are brought in who talk about CGMs, pumps, and other helpful T1D topics. Initially it was very hard for me to attend and listen, but eventually it got easier. I gradually began to realize that I just had to accept the fact that what they were talking about applied to me and the rest of my life.

I absolutely understand how your husband feels about the CGM. When my endo first suggested it, the whole idea scared the hell out of me - inserting a needle/sensor deep into my skin, something attached to me always reminding me that I have T1D, and trusting a stupid device to basically keep me alive. Rather than seeing the CGM as a tool or a safety net, I saw it as a neon sign attached to my body telling everyone, especially me, that I have T1D.

Fortunately, after I tried the CGM, I adjusted surprisingly quickly. Now I do not know what I would do without it. Insertion has gotten a lot easier for me, I honestly do not notice the needle/sensor, and there are plenty of places to put it on my body where it is not noticeable to anyone but me. Dexcom has very good videos and webinars about using their CGM. Dexcom customer service is excellent. There is also a Dexcom CGM group on Facebook where people post questions and offer some great tips.

The CGM made it possible for me to track my BG throughout the day without constantly sticking my fingers. I am glad I started using it shortly after my diagnosis and while I was still in the honeymoon stage. (Although I was not yet on insulin or carb counting, the book Sugar Surfing was also very helpful.)

The CGM helped me see how different foods affect my BG, helped me lower my A1C, and most importantly helped me see when the honeymoon stage was coming to an end, which unfortunately was while I was between endocrinologists.

I was diagnosed T1D as I was thru hiking the Appalachian Trail - solo. At the time the AT was 2,189.2 miles long (each year the mileage changes slightly). I had less than 400 miles left to finish. The CGM (and my wonderful endocrinologist) made it possible for me, despite my devastating T1D diagnosis, to return to the AT and finish the trail - solo.

I was able to accept the CGM as a tool, and it gave me a sense of at least some control over a situation that had previously seemed to be completely out of my control and overwhelming in so many ways.

I think if I had waited until the end of the honeymoon stage to start using the CGM I would have been overwhelmed all over again, and it would have driven me back into a deep depression. The fear of stepping into that deep dark scary abyss of becoming permanently insulin dependent was softened by my having several month’'s worth of experience learning to use the CGM.

The next stage, at least for me, was learning how to count carbs, and how carb-to-insulin ratios work. It took me over a year after my initial T1D diagnosis to get to the point that I was mentally and emotionally ready and able to learn what I needed to know to deal with everything T1D requires on a daily basis.

After my diagnosis I grieved for a very long time. I grieved for the healthy life I lost. I grieved for the carefree healthy retirement my husband and I planned for, saved for, worked so hard for, and were looking forward to, but which now we would never have thanks to T1D.

Weekly therapy helped me work through a lot of the grief and some issues I just could not discuss with my husband. Although, like you, he was very supportive in many ways, I felt incredibly alone. This was not supposed to happen, especially to someone healthy and active in their 50’s! For Pete’'s sake, it is called “juvenile diabetes.” I met parents of children who were recently diagnosed, and I met older folks who where diagnosed decades ago as children. But for a long time I met absolutely one who was recently diagnosed T1D as an adult, or anyone who could even remotely understand what I was going through as an adult suddenly and unexpectedly diagnosed with T1D.

As you can see, it took me a while to get there, but I eventually wanted to find an in depth T1D class. (For a while deep down I knew that I needed a really comprehensive T1D class, just like I knew I needed to learn more about insulin and carb counting, but emotionally and mentally I just was not ready.)

When I was finally ready, I decided that I wanted to learn it all at once, over a few consecutive days, rather than drag it out in dribs and drabs over several weeks or months. To my great surprise, my insurance company paid for the class (but did not cover lodging, food, or travel expenses).

After the class, my therapist and primary care doctors both noticed a huge improvement in my mood and outlook. Since the class, I have not yet seen my endocrinologist but, based upon my CGM readings, I am expecting an improvement in my A1C.

I hope the above answers your questions and helps. I have not fully accepted my diagnosis, and I probably never will. But I am slowly coming to terms with it. Therapy, learning to use the CGM, and the Mastering Your Diabetes class have all made that process much easier, at least for me.

Suzanne


(Lisa) #12

Complete newbie here at wits end - my SO of 12 years, a TID for 40 years, has had 3 bad (911 worthy) episode in 3 weeks. Until this point, it was 1-3 bad ones per year. By the time I recognize what’s going on, he is uncommunicative, his testing supplies are in complete disorder or nowhere to be found, he is physically bigger than me, and two of these latest episodes involved some “thrashing around” that was best to get out of the way of. I love this person but I did not sign up to deal this. Any encouragement appreciated - TIA !


(Suzanne) #13

It has been a few months since you initially posted. I have thought of you and your husband often, and wondered whether things have improved for both of you.

I should have mentioned in my previous posts that when I started to use insulin I felt much better and my mood swings decreased substantially.

I learned a lot of lessons while hiking the AT. It took me a while to figure out that I needed to apply those lessons to how I was dealing with T1D.

One important lesson learned was “It is what it is.” Whether it was a particularly steep stretch of trail, cold damp windy weather, or many miles left to hike when I was already tired - I could not change it, so I just had to figure out how to deal with it and move on.

It finally dawned on me that T1D is no different. I cannot change it, so I just had to figure out how to deal with it and move on.

I sincerely hope that your husband has reached the “it is what it is” point with his T1D. There are a lot of good resources available and, of course, he has you by his side, to help him deal with it. I hope he has been able to move on.


(Sandy) #14

I just joined this site. My boyfriend was diagnosed with T1 at age 50 and is now 55. We have been together for 3 years and I’ve seen his condition fluctuate, and how he manages it, fluctuate a lot in this short time. When we met he was only taking the short acting insulin, which was a terrible roller coaster. Now, he uses long lasting but does not take it consistently as it’s based on when during the date he eats and what. I’m quite concerned about his (lack of) diet in that he hardly eats anything and how often he crashes. His feet hurt much of the time and he is more susceptible to getting colds. I plan to find a group for him and hope he will go. Keep fingers crossed.