Well, I really need some advice. My husband and I are having a really tough time with coping mechanisms and our son’s diabetes. We have 6 kids. Our youngest was diagnosed at 14 months is now 23 months. I responded to someone on this site before to their question “does this ever get easier”? But now I need to ask as well. It is not a year yet but we are having such a hard time. Of course some days are better than others but today of course with the lack of sleep,is a horrible day. We talked last night about the fact that we are both so overwhelmed with this. He works full time as a teacher/coach and I am a nurse but stay at home with kids. We still try to “figure this out” meaning how to get his numbers under control but have gotten a bit better at just dealing with them as we know we will never figure them out. We have some financial issues as do most people so I’m not sure that counseling is the answer because we can’t afford it. We hate this disease badly. I’m afraid of it tearing our family apart. It seems that diabetes is controlling our life. I can see that depression is very high among diabetics but must be among caregivers as well. At this point I’m not sure how we can continue this way forever. If anyone has any ideas or information on how they as couples have dealt with or are dealing with this I would appreciate your input. Thanks in advance.
The first question I’d ask is do you have a CGM or the ability to get one? We started using Dexcom in October and it has really changed our lives for the better, particularly at night.
We do. He is on the medtronic 530G with enlite sensor. We have had plenty of issues with the sensor and are working closely with the trainers on bettering the device. I have to admit though when it is not working right it causes more stress than it is worth. I am not sure though that at this point our insurance would pay for another cgm so we are doing all we can to make it work. He has been on the pump since Nov. His numbers are so erratic though because of his age partly so it is a bit difficult but having the pump itself makes the administration of insulin easier. I just find us on a roller coaster almost daily.
We experienced the exact same thing as you. We tried and tried to make the Enlite work, but it just didn’t happen for us. Medtronic went above and beyond to try and help us but it just didn’t work. It caused us a lot of headaches in the end too. Our insurance company approved us for a Dexcom six months after trying the Enlite, no questions asked. You might think about giving Dexcom a call because they’ll take care of the insurance side of things for you. We still use (and like) our 530g pump, but Dexcom has been a game changer for our family.
That is really good to hear. Do you still use the 530 g pump and just get the infusion sets and dexcom cgm with dexcom supplies? Does insurance go for that? Some people have said that since this is a “system” they may not cover a different cgm.
Hi,
I am not a parent of a type 1 but I was diagnosed when I was 2 and now I am working towards having children of my own so that’s how I stumbled on this group. There are a few things I’d like to share. First of all, the dexcom g4 has changed my life, so do check in to it, it’s worth a try. More importantly I want to share my feelings as an adult child with type 1. I can’t tell you the appreciation I feel for my Parents. What you are doing now is invaluable. You are building the foundation and healthy habits that your child will need to live a healthy life. You are what makes all the craziness of it normal for your child. It may seem at times that this disease takes from families but there are positive things too. You and your child will learn grace, dealing with adversity, hard work, healthy eating, exercise, listening to your body and taking care of it, and your child will be mature beyond their years. Being Type 1 requires saying no to things and being OK doing your own thing which are skills that are helpful through out life. Also, being diagnosed so young is a blessing. It has been for me, living this way is all I know. I don’t miss junk food or not testing my blood sugar because I can’t remember it, it’s just my life and I’m OK with working to stay healthy. Plus, I know this was difficult on my parents in so many ways but I don’t remember that, I remember them being there and loving me and giving me the tools I need and I have deep appreciation for them now that I’m an adult. You and your child are amazing, remember that! I hope something in this helps you to see the good things this disease brings!
Our son was diagnosed 4 months ago (at 20 months) and I can really identify with the impact on your marriage. Sometimes I feel like my husband and I are only talking about how much to correct for, why he’s high, did you test for keytones, etc. the dexcom cgm and animas pump have helped some, but his numbers are often erratic and it feels like nothing we do is helping.
But I met another mom of a t1d (diagnosed at 16 mo) and is now 5. It’s been very reassuring to see that it does get easier. I still struggle, but feel hopeful that we eventually will get to a better place.
Yes, we still use the 530g pump and buy our pump supplies from Medtronic, which is covered by insurance. Our insurance makes us go through a 3rd party for our Dexcom supplies but they are still covered as well. We absolutely love Dexcom, especially now that there are remote monitoring options like the Share and Nightscout. We actually have smart watches with our daughter’s CGM number on us at all times and can look at her number on our smartphones, laptops, etc. in real time. It’s a real game-changer for us. Hang in there.
Hello there, it is heartbreaking to read your post! I have been your shoes. Our son was diagnosed at 16 months. He is 10 now and doing fabulous! Yes, yes, yes! It gets sooooo much easier. I wish I knew what was ahead of us back then. We struggled daily until Gavin was about 5.5 years old. Don’t let that scare you, he had good days but after 5 he started having good weeks. 5 is about the age he was when he was more manageable, happier and out of the danger of permanent brain damage (which took a load off of my chest). We were prepared for the worst but Gavin is a completely different child now than he was under 2. He used to be a very unhappy boy (psychotic, if you asked me) and strained our marriage and family life to a fine thread. We have three children. He is the middle one. Our oldest is 12 now and our youngest is 8. We became pregnant with her just a few weeks after Gavin was diagnosed. What a dumb idea on our part but we survived it and wish we could have had more. Our oldest has become the best caregiver ever from this experience. I used to feel sorry for him, thinking he got ripped off from a normal childhood but I have realized that he is now a well adjusted young man. Your large family is super hard to deal with now but it will give back ten fold in a few years. The five of us talk about how we all have diabetes because we are a family and we carry each other in times of weakness. This motto has made us a team against diabetes instead of each other. Our extended family not only was not keen to offering help but even refused to understand what we truly needed from them. So, my advice to you is if you do not have support from family then find yourself some strong friends that are not afraid to support you in what ever way you need. Also, simplify your life for now! Forget cleaning the baseboards (yes, I worried about such dumb things before T1D gave me a swift kick in the pants). I finally gave up on preschool for Gavin, he is an all A student now so lack of preschool was never an issue. I invited kids over regularly to give him the opportunity to socialize at home. With you having a large family, this may not be needed as much. Going away from home was always a nightmare for me, hopefully your sweet boy is easier. I took up all sorts of creative projects to keep me from going nuts. I involved them in everything that I did. My husband traveled and worked long hours and we struggled to financially make it. That was probably the hardest part. No vacation for years. We finally went to Destin,Florida when Gavin was 5. Talk about appreciating the smallest of things! I will never forget how happy everyone was! Even the long car ride was enjoyable. I am surprised that our marriage survived all those sleep deprived days and sick weeks. But it did, once again, our motto of all of us having TD1 as a family probably pulled us back together when we were tired. 9 years of dealing with T1D and I can say that all five of us can count carbs like a boss, skips sweets when Gavin cannot have them, and we are happier than ever! Fighting a battle like T1D as a family is a challenge but it could be so much worse. Try to laugh off the bad days. We still laugh about how Gavin vomited into my husbands mouth once (poor guy) and how I found our daughters poop in my hair after her zombie Mommy changed her and made that mistake. Those high numbers you see scare you but they really don’t mean a whole lot as long as you get them back down just to do it all over again. Gavin is healthy. Something I never thought I would say. He has minor damage to his kidneys and eyes but once again, it could be so much worse. We still do not have a CGM. I am considering one now. Only because I think I am ready to take on that challenge. Plus he plays sports now. I have heard mostly negative things about them from friends with T1D but I think the newer ones are actually useful. Checking blood sugar on a regular schedule has helped tremendously. We used to wing it and sometimes it would be forgotten. School is wonderful because they eat and test on a consistent schedule. I wish I had made our eating schedule at home when he was little more rigid. I think life would have been a lot easier. Also, I learned to chase insulin with food instead of the opposite when he runs high. I only do this when we stay home so I can watch for lows better. That is another thing I wish I learned to do earlier. I know this is a lot to digest and I love to ramble. Hang in there though, it really gets to be so much easier:)
Thank you all for the awesome messages. I really appreciate hearing from you all!
We have six kids too, and like you, our t1 child is our youngest (she is 12 now). The next to youngest has Down Syndrome (he is 14 now). I remember when he was born I had a friend who had a child with Down Syndrome as well, and she remarked, “I can deal with the Down Syndrome – as long as he is healthy.” I didn’t understand that until our youngest daughter was diagnosed with t1 at age 10. Down Syndrome now seems like a “piece of cake.” I never had to wake my son up in the middle of the night, nor did I worry what he was eating when he was in school. My daughter is a different story. But she adds an additional ingredient to our family. We all support her on her journey towards understanding and coping with this disease. We recently starting her on the Dexcom and it is such a pleasure! Of course my husband has to remind me not to check my phone every minute to monitor her numbers, but being able to without nagging her is such an improvement! Hang in there! We are all here for you!