Normal or Irresponsible?

TofuQT
By TofuQT Latest Reply 2018-01-03 01:01:58 -0600
Started 2017-12-19 09:36:05 -0600

Hello everyone.
My husband was diagnosed with Type 1 in September. Since being diagnosed he is weird at least 5 nights out of the week. He becomes a mix between Captain Jack Sparrow and Michael Scott from The Office, and smells of ketones. Sometimes he will become randomly depressed and mention something about dying. He has said that he doesn't want to hurt himself, but wants to just die in a car accident or something.
For the first couple months I was understanding and did everything I could. I checked his levels using the finger prick while he was asleep, or too weird to do it himself. I would bring him up to bed so my son wouldn't find him on the couch - all the while being slammed into walls because he couldn't walk straight. I would make sure he took his 24 hour insulin at night, helping him stand still why he took it. He has an endo, a very helpful GP, therapist, psychiatrist, nutritionist, we have a marriage therapist, he even has a chiropractor. His parents live a few states away, but they are always researching, sending helpful information, and gave he the book Think Like a Pancreas.

It's now been 5 months, and I can't stand it anymore. I leave him on the couch because it's just not worth someone getting hurt going up the stairs. His weepy attitude is so annoying. When he gets weird he is like another child I have to care for, and he keep accidently hurting me! The other night I was sitting on a step, talking to my son, and he came over and just randomly stumbled - slamming his elbow into the top of my head. He snores and kicks in his sleep.

I would be more supportive and understanding if he put in half of the effort I do. It took getting his parents involved to get him to eat when he should. And I tell him repeatedly that 80s are too low for him - but he keeps acting like 80 is good and doesn't eat!

Last night was a perfect example. He has the day off from work, I was at work all day, and my son didn't get him from school until 3:00. I got a text from my husband saying he would make dinner at 4:30. At 5:20 I get a call from my son - he is home from his friend's house, all of the lights are out in our house, and Dad is passed out on the couch. I told him he needed to wake up Dad. My son was barely able to wake him, found his monitor, and told me it was at 47. My husband has had the Dexcom CGM - and yes it's working. My 9 year old son, terrified, had to feed him to bring him back to life. If my husband has a CGM that tells him his number AND if he is on the way up or down AND at what pace his levels are raising or dropping - HOW did this happen within 50 minutes? This keeps happening! He's fine if someone is with all day, babying him (he seems to enjoy the attention - even in the ER) But when left alone he doesn't take care of himself!

It's such a strange feeling… I love my husband - but also hate him for being the person hurting, and taking my husband away from me. I can't imagine spending my life watching him destroy himself.


5 replies

Paradigm4
Paradigm4 2018-01-03 01:01:58 -0600 Report

Its harder for adults who have lived a normal life to accept whats happened. I was diagnosed in adult hood and manage my type 1 diabetes extremely well, if he needs help email me.

gallenp66
gallenp66 2017-12-22 13:26:10 -0600 Report

I don't mean to be condescending but how old is he? Tell him it's time to get off the pity potty. I was diagnosed type 1 when I was 17 months old. My parents refused to let me feel sorry for myself. I think you should tell him it's time to take his health into his own hands. I would tell him I am done wasting my time on someone who doesn't care enough about himself to do what he is supposed to do to stay alive. The more you cater to him the more you enable him to just let others take care of him. Until the crutch is taken away he will not change. Tough love is…well…tough but it will save his life. Depression is real. I am bi-polar with severe depression periods that last for months. I take medication to get through it and it works…but only if you take the medication and do what the Dr. tells you to do. This is tough on you and it shouldn't be. You are basically a single parent now because not only do you have to take care of the children and the household you now have another child in your husband to care for. He is a diabetic…too bad it's a fact of life. I am not nice to diabetics who refuse to take care of themselves and cry about their health. I tell them if they think they have it bad to go to a children's hospital and see those little baby's dying of cancer. You have to live too and all this stress is affecting your health as well which is just as important as his. I wish you the very best but please remember you have to care for yourself as well.

Type1Lou
Type1Lou 2017-12-21 11:45:19 -0600 Report

It's still quite early in his diagnosis and he is likely overwhelmed and in denial. I'm happy to hear that you are in counseling. I also understand your resentment at being forced to act like his mother. He needs to take responsibility for his disease and that means learning how to try and stay in balance. With knowledge, the right medical support and determination on his part, it can be done…BUT, he must want to do it. I was diagnosed with Type1, 41 years ago, at age 27. Prior to starting an insulin pump in 2011, I was on multiple daily injections of NovoLog and Lantus. I do not use a CGM, but I test my BG 8X/day. In my late 50's and early 60's, I started experiencing more and more serious low BG's. (I don't feel that 80 is Low for me, but I've had years of better control to make that determination.) When the last scary low landed me admitted to a hospital while on vacation in 2010, that's when I decided to try a pump which has given me more flexibility and greater control with no more really serious low BG's. If your husband doesn't become serious about gaining better control, make sure all legal matters have been resolved (wills, deeds, bank accounts etc) since he's on the road to an early death. You need to think of yourself and your son. With determination, a person can live well with diabetes…but, it demands effort and accommodation. Wishing you all well.

Gabby
GabbyPA 2017-12-20 17:03:28 -0600 Report

I am so sorry for what you are going though. I am happy to help with what ever I can share anytime. This is a lot for you to be dealing with, but it is also a lot for him to deal with, and maybe that is why he's not really dealing with it at all.

Is there anytime in his day when he is not loopy? A time when you can express how you feel, and take some time to find out how he is feeling too.

Diabetes is not a one person disease, for sure. It does affect the whole family and when the one with it is still in denial or any of the rough stages of diagnosis, it takes a toll on everyone. This may also be taking a toll on his work and the workplace. You may want to find out what is happening there as well.

So in short, the answer is YES to both your questions. It is normal to grieve the loss of a way of living that he has always known. Its a HUGE change and it is not the same for any one person, so comparing is not always fair. And Yes, there is some irresponsibility going on on his part, but he may need more time to figure it out. And more help than maybe just you can give. Family is often rejected in the advice and help column.

So here are just a few observations of what you shared. I don't know the whole story, so pick what works or what you think might help. Tuck the rest away, because it may come in handy.

When we suffer lows, our bodies do weird things, our brains get foggy and we shake, have little control over what our bodies do and it can happen in a matter of minutes. I have dropped from 120 to 34 in less than 15 minutes, no clear reason, but my body just made that change. It is frightening. When he gets a low, he can do and say things that he doesn't mean to do. For real. Not that he can't take advantage of it, but the loss of control is very real.

He may be feeling like why try. That is hard to overcome until he is ready. The denial part often manifests in no self care or poor self care. It is normal, and it takes different time for people to climb out. Your counseling my help in that, but a grief counsel approach is most likely going to be the most helpful.

He might be enjoying the attention, and maybe that needs to be addressed. But I bet if you dig a little, you may find fear and being overwhelmed may be part of what is making that happen.

Teaching your son will take away panic, and while not ideal, just like teaching a young one to call 911, getting him the tools to help dad when dad can't help himself will give him greater confidence.

What kind of work does your husband do? Is it very active or sedentary? Does he go to the gym or hang out on the sofa? These things all affect his levels and how the rise and fall. An 80 is actually a very good number. He is right. But if he is trending down, it is time to keep an eye on it. If he is stable, no need to eat something. It sounds more like his insulin doses need to be adjusted or a better understanding of what he is really eating or not. If he is not eating, he needs less insulin, but that does take some knowledge of what is going in his mouth. This is something you can all learn together. It's very beneficial for the whole family, not just him. Having a CGM is helpful, but only if you let it guide you. Perhaps he finds it not to his liking.

How does he want to manage his diabetes? Not the doctor, not the nutritionist, not even you....how does HE want to manage it? Sadly, it is not up to anyone else to manage it for him. It's horrible to see someone you love self destruct, but when he hits a point where he sees the need, then and only then, is it going to come around. It usually does. It can take some time however.

There is so much and it is a big diagnosis. He may feel failure, or anger, or frustration, or even jealousy that you don't have it and he does. There is a range of things going on inside, that once you can tap into them, and make them work for you, your team may make some breakthroughs.

Again, I am sorry for what is happening. There are no easy answers. But it is a time for candid discussions, some rules and some limits for everyones' sanity and safety.

Love him, love your son and love yourself. Seriously on the last one.

msann
msann 2017-12-20 10:26:31 -0600 Report

wow can he work hold job down you said his meter working but sounds like he not and does he care diabetes is a hard disase to deal with on your own but omg you are overwhelmed you need some help do you have family near you keep me updated good luck praying for your family

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