My son was diagnosed with T1 2 years ago at 16. I have been with him from the start learning everything. He is now 18. I feel I have lost myself along the way. I feel I am constantly worrying about his sugars as I am worried about the effects of high sugars in the future. I feel I need to find myself again as I feel my thoughts etc are mainly about diabetes and this impacts my family and my mental health. Anyone else out there feel the same or have any tips. Just wish some professional out there can say it will all be fine but truly no one knows.
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Feeling lost
- Thread starter Farm Mom
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Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Oh bless you. I certainly felt like that in the early years. We’re coming up to 5 years since my son was diagnosed aged 8. My husband is very definitely involved in the diabetes care and I know he worries a lot too but a lot of the day to day stuff falls on me and I have felt lost, overwhelmed, and trapped at times.
For me ‘good enough’ is the aim. Long term health with diabetes is a balance of letting them fully live their lives and take care of their BG. There will be times when it’s not perfect. There will be times when it’s a struggle to get the basic level of care done. That’s just life. He went to clinic this week for the first time in a year (he’s been refusing to see anyone but as his numbers were basically fine we’ve just kept in touch with his team via email). He’s on a pump and sensor (tslim and dexcom) so that has improved care a lot. He’s doing most of his own carb counting now and has always been the one to do the actual injections or putting on new cannulas etc so our role is very much just a support one.
We don’t restrict sweets and cake etc. And when he gets to the stage of wanting alcohol we wouldn’t get in the way of that either.
There are worries as a parent whatever your kid is going through and that doesn’t stop when they turn 18. The good news with diabetes is that it is manageable. It is a ‘good time’ to have diabetes because of the technology available to help with management and because the understanding around how best to manage it is always improving.
It has got easier for me with time to let go of the reins a bit. I have my own life as well as being a parent. But I am still connected via the follow app pretty much all the time so even when I’m not here I’m still usually the one who actually wakes in the night with hypo alarms etc.
Are there specific things you’re worried about? Or just concerned generally with having a chronically ill child? What things do you like to do for yourself?
For me ‘good enough’ is the aim. Long term health with diabetes is a balance of letting them fully live their lives and take care of their BG. There will be times when it’s not perfect. There will be times when it’s a struggle to get the basic level of care done. That’s just life. He went to clinic this week for the first time in a year (he’s been refusing to see anyone but as his numbers were basically fine we’ve just kept in touch with his team via email). He’s on a pump and sensor (tslim and dexcom) so that has improved care a lot. He’s doing most of his own carb counting now and has always been the one to do the actual injections or putting on new cannulas etc so our role is very much just a support one.
We don’t restrict sweets and cake etc. And when he gets to the stage of wanting alcohol we wouldn’t get in the way of that either.
There are worries as a parent whatever your kid is going through and that doesn’t stop when they turn 18. The good news with diabetes is that it is manageable. It is a ‘good time’ to have diabetes because of the technology available to help with management and because the understanding around how best to manage it is always improving.
It has got easier for me with time to let go of the reins a bit. I have my own life as well as being a parent. But I am still connected via the follow app pretty much all the time so even when I’m not here I’m still usually the one who actually wakes in the night with hypo alarms etc.
Are there specific things you’re worried about? Or just concerned generally with having a chronically ill child? What things do you like to do for yourself?
Sally71
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
It’s tough letting go when your child grows up isn’t it. From the day my daughter was born I knew it would be hard, and that’s without knowing what medical problems she would end up with that make it even harder. My daughter was diagnosed at age 6 and is now 17, so we’ve been dealing with diabetes for 11 years and compared to problems she’s had since, that’s the easy bit to be honest. I was like you at first, trying too hard to get her numbers perfect all the time, and worrying myself silly when I couldn’t, and wondering what the future would hold. A few things helped me:
1. DSN pointing out that “there’s no point having perfect numbers all the time if that’s all you think about, you have to enjoy life too” and she’s so right, once I learned to relax a bit and accept the fact that you will have some days when it all goes a bit wrong, life got a whole lot easier. And also learning to accept that it’s impossible to get perfect numbers all the time anyway, no matter how hard you try.
2. My daughter will be an adult in less than 6 months and she’s got to learn to deal with it herself, even if she gets it wrong sometimes. We have Dexcom Follow but it stopped working a few weeks ago, I suspect that we’ll have to reinstall all the apps to get it working again and my daughter really doesn’t want to mess about with her phone at the moment so I have to respect that. If she goes away to a university that’s not near here there won’t be much point me knowing her blood sugars all the time if I’m too far away to do anything about it, so I might as well get used to not having them now. And she’s managing just fine. I’m sure when she’s in her 20s and 30s and has moved out permanently she won’t want me knowing them all the time either!
3. Technology and knowledge about diabetes has improved massively in the last 20 years, so whilst it used to be considered life limiting, it isn’t any more, as long as your son puts some effort in to look after himself. How does he manage on his own?
4. My mum was diagnosed type 1 in 1967 when there was none of the technology there is now, she had one insulin injection a day, no blood testing equipment, only urine sticks, didn’t get a home blood testing meter until some time in the 1980s so thinks it’s a luxury and doesn’t always test every day, and she’s still here at the ripe old age of 79
Do you have friends that you can go out with occasionally, or a hobby, or something that just takes you away from the home for a little while so that you can be yourself and think about other things? Your son has to learn to deal with it himself, I realise you’ve been doing it a lot less time than we have but it will come. Just small steps to gradually reduce your dealing with the diabetes and let him do it on his own. I felt so much better when it wasn’t the first thing I thought about all the time. Good luck 🙂
1. DSN pointing out that “there’s no point having perfect numbers all the time if that’s all you think about, you have to enjoy life too” and she’s so right, once I learned to relax a bit and accept the fact that you will have some days when it all goes a bit wrong, life got a whole lot easier. And also learning to accept that it’s impossible to get perfect numbers all the time anyway, no matter how hard you try.
2. My daughter will be an adult in less than 6 months and she’s got to learn to deal with it herself, even if she gets it wrong sometimes. We have Dexcom Follow but it stopped working a few weeks ago, I suspect that we’ll have to reinstall all the apps to get it working again and my daughter really doesn’t want to mess about with her phone at the moment so I have to respect that. If she goes away to a university that’s not near here there won’t be much point me knowing her blood sugars all the time if I’m too far away to do anything about it, so I might as well get used to not having them now. And she’s managing just fine. I’m sure when she’s in her 20s and 30s and has moved out permanently she won’t want me knowing them all the time either!
3. Technology and knowledge about diabetes has improved massively in the last 20 years, so whilst it used to be considered life limiting, it isn’t any more, as long as your son puts some effort in to look after himself. How does he manage on his own?
4. My mum was diagnosed type 1 in 1967 when there was none of the technology there is now, she had one insulin injection a day, no blood testing equipment, only urine sticks, didn’t get a home blood testing meter until some time in the 1980s so thinks it’s a luxury and doesn’t always test every day, and she’s still here at the ripe old age of 79
Do you have friends that you can go out with occasionally, or a hobby, or something that just takes you away from the home for a little while so that you can be yourself and think about other things? Your son has to learn to deal with it himself, I realise you’ve been doing it a lot less time than we have but it will come. Just small steps to gradually reduce your dealing with the diabetes and let him do it on his own. I felt so much better when it wasn’t the first thing I thought about all the time. Good luck 🙂
Thank you for the replys. I do love walking and do alot of that and being out on the farm Whilst my son deals with most of it on his own, I worry because he just doesnt seem to be worried if he is high for ages or take on board about dosing 20 mins before eating or that he should have a certain amount of treatment for a low so then goes high. He also won't tweak his ratios etc to improve his value so that is down to me as he would just ignore any problems. He is a good kid and I probably expect too much from him but sometimes i feel like I am talking to a brick wall. Sorry for the moan, think as a mum it is just so hard to let go and let them fend for themselves. He gets the Omnipod 5 in January and I am hoping this will help him alot .Thanks again
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Living in the now is very important. I think of diabetes stuff as like the weather. The highs and lows can feel like a bad storm or a hot spell and we can get bogged down into thinking that’s who life is going to be forever but we need to look at the longer term climate and as long as that’s mostly ok then long term health will likely be mostly ok too. I was amazed at how ‘bad’ his BG could be for what seemed like weeks but his HBA1C has always been decent.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Diabetes can easily fill our minds, whether as a parent of a person with T1, or if we have it ourselves. It is important to manage our diabetes as best we can, but we also need to live our lives, and it is a difficult balance to find.
As others have said it will be hard to let go and to allow your son to manage this. I had T1 a good while before I had ever heard of pre-bolusing for meals, there were no sensors, …. The tech available to us is constantly improving and making things easier, but also shows us a lot more of what is happening between our meals. For your son he will find his way through this and his balance of management and living life will change and will be different from yours at times, which will be hard.
You have put a lot of time into helping him, and as he grows more independent it may be time to focus more on your needs. It is great that you enjoy walking and being on the farm. Do you have other things that you would like to do. When you are doing these things do you have alerts for your sons levels on your phone. Perhaps switch these off?
Would it help to have a conversation with him about what he would like you to do? Whilst I was diagnosed a lot later in life, I value the support that I get at home which is mainly the carb count for a meal when OH is cooking and being given this 30 min before we are going to eat. That is also a useful reminder for me to do my pre-bolus. I more often forget to do this when it is me cooking. Apart from that I value his calm head when things go wrong, or I need a rant.
As others have said it will be hard to let go and to allow your son to manage this. I had T1 a good while before I had ever heard of pre-bolusing for meals, there were no sensors, …. The tech available to us is constantly improving and making things easier, but also shows us a lot more of what is happening between our meals. For your son he will find his way through this and his balance of management and living life will change and will be different from yours at times, which will be hard.
You have put a lot of time into helping him, and as he grows more independent it may be time to focus more on your needs. It is great that you enjoy walking and being on the farm. Do you have other things that you would like to do. When you are doing these things do you have alerts for your sons levels on your phone. Perhaps switch these off?
Would it help to have a conversation with him about what he would like you to do? Whilst I was diagnosed a lot later in life, I value the support that I get at home which is mainly the carb count for a meal when OH is cooking and being given this 30 min before we are going to eat. That is also a useful reminder for me to do my pre-bolus. I more often forget to do this when it is me cooking. Apart from that I value his calm head when things go wrong, or I need a rant.
Leadinglights
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
I found this which may help you with dealing with a tricky situation as I suppose he is now an adult. You still never stop worrying about them no matter how old they are. It is what Mums do.
marina winter
Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi, so good to read your message as made me feel quite normal opposed to the anxious mum I’ve become.
My son is 25 still lives at home and we’re very close, he was diagnosed 1 year ago with type 1.
His journey has been so stressful, fluctuating levels, continual issues with prescriptions, mood swings, denial and at times just refusing to eat.
It’s been an awful year with my levels of anxiety raising most weeks.
He’s 25, a sensible 25 so crushes me completely when he struggles with coping and his mental health.
I know I’m not alone but keep an eye on this forum for others who share my pain as a parent.
My son is 25 still lives at home and we’re very close, he was diagnosed 1 year ago with type 1.
His journey has been so stressful, fluctuating levels, continual issues with prescriptions, mood swings, denial and at times just refusing to eat.
It’s been an awful year with my levels of anxiety raising most weeks.
He’s 25, a sensible 25 so crushes me completely when he struggles with coping and his mental health.
I know I’m not alone but keep an eye on this forum for others who share my pain as a parent.
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
I found the first year or so incredibly difficult and we had everything, fluctuating levels, refusing to eat, trying to eat carb free so as to avoid insulin. Everything. It does get easier I promise. Still not easy but definitely more mundane.
marina winter
Member
- Relationship to Diabetes
- Parent of person with diabetes
I so hope it gets easier, if I could swap places with my son I would in a heartbeat, it has made him so desperately unhappy. We’ve tried to reach out to his diabetic team, appreciate they’re very busy but get no where.
Hoping life settles for him and he can enjoy life without the constant worry.
Thank you for your reply - appreciated x
Hoping life settles for him and he can enjoy life without the constant worry.
Thank you for your reply - appreciated x
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Childhood diagnosis is very different and we’ve had great support and even then it’s been tricky. Adult diagnosis means you get a lot less support. Use the forum as much as you can.
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