Open conversation about the challenges of being a caregiver


(Lorraine) #1

Hello everyone,

I have been a caregiver for my son for the last 16 years and although he is very self sufficient at 18 I can remember a time when he wasn’t and my husband and I had to carry the weight of managing his T1 and there were some challenging moments. I would like to know how many of you have or have had days where you’ve wanted or want to pull your hair out by asking if you would answer this one question:

What are your most challenging aspects as a caregiver to a child with T1D?

Please share your experiences by replying to this post. Thank You


(Hollykio79) #2

Hi. My son was diagnosed Nov 10th of this year… He is 13. and things are a constant roller coaster. I’m not sure on how to handle him most the time with his outrages and hatred on what he is going through. Any advice you have to offer would be greatly appreciated. His sugars are all over the place they will in a matter of 2 hours go from 373 to 72… I know 72 isn’t badly low… But it makes a huge difference in how he feels. He hates how it makes his body feel and is often taking it out on others in the house because he doesn’t know how to react… He’s still holding on to this hope that he was misdiagnosed or something and just doesn’t want to accept this is his lifestyle now. I’m so frustrated and literally spend many sleepless nights just crying to try and get it out to face the next day…


(Lorraine) #3

Hello Holly,

Sorry it took me so long to respond, I had a busy week. I know this is a frustrating time for you and your family but; it does get better and easier as time goes on. One of the first things I would say is to keep in mind that he was just diagnosed with a life altering disease that he has to figure out how to deal with and unfortunately for him it came at a time when he is also dealing with puberty. This means that some of his emotional and angry outburst and behavior are more then likely stemming from changes his body is going through that he does not know how to express or handle. The fluctuating blood sugar levels are from his body also trying to figure out what is going on, especially now that he has insulin running through it, it needs time to find the right balance and over time with proper management and a good attitude it should do that and his levels will be more consistent. You are right 72 is not low but when he drops drastically it does affect him more physically and emotionally then we realize so his outburst of anger are unfortunately normal at the moment until he begins to learn his body and what to expect from it. What I mean is: drastic drops in blood sugar from extreme high to extreme low (72 is very low when he started at 373) make them feel nauseous and drains them of energy (at least that is what my son goes through and how he describes it), it puts a lot of strain on the body to drop so quickly and drastically. I would suggest trying to keep a closer watch on what time of day this is happening to him and compare that with the types of foods he is eating and how much insulin he gives himself at those times. If you are noticing what time of day or what he is eating when his blood sugar spikes it will help you figure out what to eliminate or minimize the amount of that food from his diet, also look at the Insulin to carb ratio to see if he is giving himself the right amount of insulin for the amount of carbohydrates he is eating. Not having enough insulin can of course be the cause of the high blood sugar levels just as having too much can be the cause of the lows. If you are unsure what the Insulin to Carb ratio is or how to find that information call his doctor or diabetes specialist. I would also talk to them about all of your concerns you just posted they should have information and suggestions on how to help both of you manage this. I would also suggest trying to gently remind him that getting upset is not going to help matters especially since emotions and stress can cause the blood sugar levels to rise or lower depending on the person.

From a parent standpoint it is normal to worry and you will at first, don’t beat yourself up over that, however; try to remind yourself that this is temporary and things will get better, deep down your son is as scared as you are he just won’t tell you that but; you have to also try to give him a little space to figure out for himself what he needs to do. Sometimes the hardest part as parents is remembering that it is not happening to us but to them and we have to be able to give them the opportunity to learn to manage this ailment on their own, this is important for them as well as it is for us. I hope this helps and please let me know how things go as time goes on. I wish you all well.


(momofEEWtid) #4

I’m scared. My 9yo son was diagnosed in June 2016, I have experience with DKA as I am a respiratory therapist. BUT it is so different when it is your own child. My Ethan got sick in the summer, but I didn’t see the signs until he lost so much weight that he looked like a starving child. I took him to the dr, they did a fasting blood work, the next day we were in Childrens hospital of Philadelphia with a whole new life. My baby was in DKA, I felt sick inside, scared and wasn’t sure how he would handle it. He is an extremely picky eater, goes thru spurts of eating JUST pizza or JUST eggs… when they told me NOT to change his eating habits right away, i was somewhat relieved. He has food aversions… it just sucks.
He isn’t ready for a pump, and neither am I really. He was in private school, no nurse for the first cpl of months. So we are homeschooling this first year of diagnoses. We use a pen, and his night shot is with the regular syringe, he hates it. He cries, after I give it, I cry… it SUCKS!!! I am actually waiting for a phone call now from his dr. bc his sugar has been high, I can’t seem to get it to go down.
I am the primary care giver for Ethan, his dad pretty much treats this like its no big deal, no support with it, I am teaching my sister bc I go back to work in January and Ethan is refusing to let her give her a shot, but I NEED to see she will be ok… I just need some support, going at this alone is scary.
I know I keep going lol… I just needed to talk to someone going through this as my family doesn’t understand, and his dad (we are not together) just treats this as what ever… if ethan refuses a sugar check, dad just say’s ok… but it is NOT ok!!! ugghh… I want to cry!!!


(vmccord) #5

The two things I struggle with most are 1) Managing (hiding) my anxiety for my daughter’s future health and 2) Walking the line between letting her manage her own body and taking over when necessary.

I am sure everyone here has become familiar with the ads bombarding you for items relating to diabetes side effects. Just the Google searches that found Type 1 Nation led to ads for special socks and test strips and worse. That possible future just looms over me when my child pings at 384 for the third day straight. The vision of it panics me and both of my children see how terrified I am.

My daughter is 13 and has always been pretty responsible. She does a good job generally, but as we all know, lows feel bad immediately, but highs don’t. She got into the habit of not mentioning high bg to me and I understand why. When I freak out and start asking her to drink water and go for a walk and do a correction when she is high, why would she tell me.

In a way the solution for both has been to take over earlier, but negotiate. It’s funny, me checking her meter doesn’t bother her, but asking her what her bg has been does. Even me asking where her meter is doesn’t bother her even though she knows it’s because I’m going to check it.


(Lorraine) #6

Hello Vmccord,

I am glad that you have reached out with your concerns please hang in there and know that I hear you and have been there in some way or another and it does get better. I am pretty busy at the moment but wanted you to know that I am aware of your post and will respond tomorrow night when I have some downtime.

L


(Lorraine) #7

momofEEWtid,

I am glad that you have reached out with your concerns please hang in there and know that I hear you and have been there in some way or another and it does get better. I especially have experience dealing with schools and shots so I understand why you are home schooling instead for now. I am pretty busy at the moment but wanted you to know that I am aware of your post and will respond tomorrow night when I have some downtime.

L


(Lorraine) #8

momofEEWtid,

I hope things have gotten better for you and your son I know things seem really bad right now but over time it will get better for the both of you even if it seems like it won’t. I know how it feels to have your baby in the hospital sick and not be able to do anything about it; when my son who is 18 now was first diagnosed at 23 months old it was due to him being in DKA as well with a blood sugar level of 584 he pretty much slept for four days after having a Viral Infection for two weeks and when I took him back to the Dr. on the 4th day it took them 4 hours to diagnose him and we too (my husband and I) went home after about 4 days with a new life and new emotions that you didn’t know existed. Even though it was 16 years ago we struggled with giving him his shots and yes he cried which made me want to cry often especially since he was only 2 years old it was even harder to explain to him why we were doing it so it made it harder. At the time our Dr. didn’t think it was a good idea to put him on the pump right away (which was common all those years ago) so we dealt with shots for the first 5 years so I know how it is. The only thing I would say is to keep doing what you are doing because it is the right thing, you do need to be concerned and monitor everything Ethan is doing, eating and what his blood sugar levels are whether he likes it or not, that is the only way to get on top of his levels and learn what it takes for you and Ethan to get them under control. The things that need to be tweaked are different for each family, sometimes it is what or how much the child is eating or drinking and other times it is whether or not you check their blood sugar more then usual or give them their insulin before they eat instead of after. These are just suggestions so don’t quote me on them but I have found over the years that sometimes these changes can make a difference with their blood sugar readings. Maybe in time your son’s father will come around but in the meantime try to keep your spirits up and find a moment for yourself to unwind and relax, it seems hard but it will help. Feel free to reach out again if you need to.

Take are, L


(Lorraine) #9

Hello Vmccord,

Having a teenager is tough especially one with T1 I’ve been through those years and yes they can be some of the rough ones. My son was diagnosed at almost two years old so by the time he was 13 he had been a T1 for sometime and actually grew tired of it, I remember at one point he pretty much stopped caring; so I am able to relate to your fears and worries. However; first PLEASE DON’T PANICK! This is more than likely a phase she is going through (it was for my son) and she will more than likely grow out of it. The important thing to remember is that she is also a female teenager and is going through puberty which we all know affects their thoughts, attitudes and body physically so her highs could be due to her body trying to handle both puberty and diabetes. It has been known to play a major part in the fluctuating blood sugar levels. Also even though high blood sugar levels may be the cause of complications later down the line worrying yourself over that is not healthy for you or your daughter so I do hope that you find something or someone to help you manage your anxiety. From my understanding it takes a lot of extreme highs over long periods of time to cause any major damage so I don’t think it is something you should be overly concerned with. It sounds like you may need to have a heart to heart with your daughter to let her know how much you are and why you are so worried all the time, this may help her see why she should be more open and receiving to you and your questions and suggestions. There does however; come a point when we have to d what is probably the hardest part for us as a parent which is trust that they know what they have to do, what they are doing and what they will do. It may take some time so take it slow and try to find some time for yourself to relax and clear your mind of all that is worrying you at least one a week so that you are not so anxious around your kids. I hope this helps and feel free to post again with an update or just to talk. Take are.

L


(Sambat7) #10

Hi L,
Thanks for starting this conversation! I think my Most challenging thing is not being able to go away with my husband on vacation. I’m Actualy away now and totaly regretting it lol. Not sure it’s worth the anxiety … ( I went only for 2.5 days so I can be home to change his pump site)
Another challenge now is that all his friends are going to sleep away camp and i wish I can send him as well ( he’ll be 12 this summer) I’m just too nervous to send him.
I know before I turn around he’ll be an adult and taking care of himself hopefully but in the mean time we mothers have to be there for our children.


(princessn0) #11

my son got diagnosed when he was 5. on 6-7-08 it was his fathers birthday and we were at a wedding. I just thought that he was sick and even took him to a doctor who told me he had bronchitis 3 days prior. so here I go. I rushed him to the hospital and he checked for keytones and they checked his sugar and it was over 1200. he wasn’t in a coma was still somewhat responsive. so he got rushed to another hospital that could help him better. now jump to now. we have been told he is wore out of having diabetes and he would push us. we got him into a counsilor and that isn’t seeming to work. but right before Christmas break we got cps called on us. his sugars are always higher than they are supposed to be, and the complaintant said that he had passed out from his sugar being to high. let me say this he has never passed out. his sugars have even gotten down to 25 and he is still responsive and talking. but anyways, just a little bit ago I got another knock on my door from the same cps lady and a guy too. and she informed me that I’m medically neglecting my son. he never want to check his sugars and he always sneaks food at night when we are all sleeping. the social workers idea for this is putting locks on everything, and don’t have any food that he cant eat in the house. it dosnt matter what I have he will sneak anything, canned veggies leftover dinner anything I have. I have even bought a freezer that locks so he cant get into it. I’m lost at what to do now. he is now taller than me and I cant sit on him to check his sugar. but I’m also afraid of loosing my son because they don’t think that I can take care of him


(Sambat7) #12

I am so sorry for what u r going thru. Being a teenager isn’t easy. Maybe u can work together with a nutritionist who specializes in type 1 . Maybe u can sit him down and explain to him that he if he follows a healthy plan and chks his blood sugar and gives insulin he can live a healthy life. I feel that when kids are diagnosed at a very young age they aren’t fully aware of what is going on and don’t understand the severity of taking care of themselves . He may need a lesson of what diabetes is to fully understand. I hope everything works out for you! Wishing u the best of luck !


(princessn0) #13

We have tried to sit him down and talk to him about what to eat and what he should stay away from. We have had the doctors be it eye doctors ect… show him what could happen if he doesn’t get his sugars under control. He has to want to keep his sugars under control and be healthy and I can’t make him want that. And thanks for the input.