Parent of young adult needing advice please

[fingerchecker]

Hello, my daughter was diagnosed age 4, now 20 and has struggled for the last couple of years to manage her care.

I’m at a loss as to what to do to help her now, I’ve tried every approach possible and she really doesn’t want me involved.

I try my best to support her in surrounding ways and she knows I’m always here if she needs me but the last few years of living like a teenager and not looking after her diabetes are now catching up with her - she has revived a letter today saying she has diabetic maculotherapy and I’m devastated and past myself with worry. My daughter is not talking about it and I can’t see that changing too much.

if anyone has experienced similar I would appreciate your thoughts on what to expect or if you can share any ways in which you manage to cope with the anxiety of the situation would be a massive help.

Thanks to anyone who reads this post. It’s my first one in a long time.

 

[rebrascora]

Hi and welcome.

I am so sorry to hear about the situation you and your daughter are in and that there has been some deterioration in her sight. I hope she is able to find the motivation and courage to attend the hospital appointments and undergo whatever treatments can be offered to improve the situation.
I believe it is not uncommon for young adults to go through periods of neglecting their diabetes and "burn out" can affect us at any age but I think that age group are particularly vulnerable to it. Has she reached out to her DSN for support. I believe they are trained to deal with or refer for psychological support, but I also know that diabetes departments have been under stress due to Covid and access to resources has been more difficult.

There was a young man joined the forum about a year ago who made a you tube video about his struggle with neglecting his diabetes and subsequent eye treatment and how he found a way through it with the help of meditation. It was very emotional, honest but also uplifting. He was setting up a business to help coach people through similar situations I believe.
He hasn't visited the forum since then but I wonder if your daughter might get some inspiration from viewing that video and perhaps making contact with him. It certainly seemed to be his intent to help others going through such a difficult time with diabetes. I will see if I can find the link to his video. It was very compelling watching.

 

[rebrascora]

Having done some searching, I eventually found the post with the link to his video but it isn't working.... I think because there is a problem with this forum allowing You Tube links at the moment.
@everydayupsanddowns the video was linked on this thread...
https://forum.diabetes.org.uk/boards/threads/my-diabetic-story.94634/
Are you able to somehow unlock it Mike? I know you have special magical powers in this respect and I feel it could be really helpful in this case.

I have tried searching You Tube for the forum member's user name (Lewis Muchin) but it isn't coming up with anything..... or perhaps I am not doing it right.

Perhaps a Google search of his name may bring up a website.

 

[Inka]

Hello @fingerchecker You say your daughter has been struggling for the last couple of years - is there an obvious cause eg work, uni, friends, mood, a change of circumstances, burnout, etc? Or do you simply think it’s related to her age and just being fed up with being ‘different’ and having the nuisance of Type 1?

It’s very hard if she won’t talk to you - is there someone she could talk to like a relative or a close friend? Obviously, she should talk to her team but sometimes it’s easier to talk to someone unrelated to diabetes who won’t ‘judge’.

Would she join this forum, do you think?

 

[everydayupsanddowns]

I think because there is a problem with this forum allowing You Tube links at the moment.
@everydayupsanddowns the video was linked on this thread...
https://forum.diabetes.org.uk/boards/threads/my-diabetic-story.94634/
Are you able to somehow unlock it Mike? I know you have special magical powers in this respect and I feel it could be really helpful in this case.

I have had a quick look and there was a fix which was relatively simple to apply. Youtube Videos should be loading again now. 🙂

 

[fingerchecker]

Thank you so much for taking the time to reply. She has been engaging with psychologist support on and off over the last year, I don’t really know how much she put into this. I know she finds talking about it very difficult. I will have a search for the video.
Thanks again

Hello @fingerchecker You say your daughter has been struggling for the last couple of years - is there an obvious cause eg work, uni, friends, mood, a change of circumstances, burnout, etc? Or do you simply think it’s related to her age and just being fed up with being ‘different’ and having the nuisance of Type 1?

It’s very hard if she won’t talk to you - is there someone she could talk to like a relative or a close friend? Obviously, she should talk to her team but sometimes it’s easier to talk to someone unrelated to diabetes who won’t ‘judge’.

Would she join this forum, do you think?

Hello, thanks for replying…I think she just wants to be like her friends and go out, be carefree, have fun and is still also conscious of her pump when wearing dresses etc. She hates me mentioning diabetes at all, anything I try to say is dismissed fairly quickly.
when I have mentioned forums in the past she has never been interested, i will try again. I’ve yet to see how this latest development changes things, if at all. I pray it does, I’ve watched the video mentioned above and have spent all day terribly upset and very scared.
thanks again for your reply.

 

[fingerchecker]

Thank you so much for taking the time to reply. She has been engaging with psychologist support on and off over the last year, I don’t really know how much she put into this. I know she finds talking about it very difficult. I will have a search for the video.
Thanks again

Hello, thanks for replying…I think she just wants to be like her friends and go out, be carefree, have fun and is still also conscious of her pump when wearing dresses etc. She hates me mentioning diabetes at all, anything I try to say is dismissed fairly quickly.
when I have mentioned forums in the past she has never been interested, i will try again. I’ve yet to see how this latest development changes things, if at all. I pray it does, I’ve watched the video mentioned above and have spent all day terribly upset and very scared.
thanks again for your reply.

Thanks too for fixing the video

 

[fingerchecker]

Thanks too for fixing the video

 

[Inka]

Hello, thanks for replying…I think she just wants to be like her friends and go out, be carefree, have fun and is still also conscious of her pump when wearing dresses etc. She hates me mentioning diabetes at all, anything I try to say is dismissed fairly quickly.
when I have mentioned forums in the past she has never been interested, i will try again. I’ve yet to see how this latest development changes things, if at all.

@fingerchecker It’s very hard for you if she’s being defensive. I would guess this is because she feels nothing you say counts because you don’t have Type 1 and ‘don’t know what it’s like’. That’s why forums like this are so good - because we do know what it’s like. Finding others like you can be empowering.

Treading the thin line between caring and scaring is very hard, but possibly this would be one occasion when I’d be a little more blunt. You could also phrase things in a way appealing to her strength - ie does she want to give in to diabetes, or fight it back into its place? Does she want to hand it the power to rule her life?

Depending on what pump she has, there are a number of options to conceal her pump. I use a Hid-in belt,or a Tubigrip on my thigh. Just this week someone I’ve known for around 4 years found out I had diabetes. She simply hadn’t noticed my pump (I bolus from my phone) or noticed me as in any way different from the other women in our little group. So, if she controls her diabetes and is confident about its back seat place rather than letting it ‘drive the car’ and control her, nobody will think of diabetes first when they look at her. She’ll be pretty much just like her friends. The key to being like them is to control her diabetes.

 

[rebrascora]

I’ve watched the video mentioned above and have spent all day terribly upset and very scared.

Oh Gosh! I am so sorry you were adversely affected by the video. I was thinking more for your daughter to watch it rather than the impact it might have on you, as you are clearly already very worried. I just felt that someone of her peer group talking about going through the same difficulty that she is and how he learned to cope might help her to take it more seriously and find a way forward with it. Sending (((HUGS))) to you. It really helps mixing with others who are diabetic and sharing thoughts and ideas and frustrations, even just virtually, as we then feel more normal and learn from each other's experiences.

 

[EmmaL76]

I was just wondering if there is a particular thread / section on here that is dedicated to teens/young adults? I know exactly how you feel finger checker. My eldest daughter has extreme hype mobility. This put a stop to her dreams of becoming a PE teacher, the sports just got tougher and tougher. Also shopping trips and days out with friends would really drain her. Her physio told her it would not be advisable for her to have children of her own. All I can say by way of making you feel better is that she is now 24 and doing really well, has a brilliant job and is a portrait artist on the side. She is happy and adjusted. She spent many years angry, depressed and basically taking it out on me! Now her experiences have given her so much empathy for others. I’m sure your daughter will eventually find her way but I know its horrible watching your children suffer especially when there is a limit to how much you can help them or how much help they will accept. Xx

 

[CharlotteScr]

Hi @fingerchecker your situation rings very true with me. My daughter is 16 and was diagnosed 10 months ago. She is grown-up for her age, which has meant she has taken on her diabetes management almost entirely herself. She used to discuss it with me, but has recently refused to. She has her routine and will not vary it unless things go badly wrong- I think she tries to give her diabetes the minimum brain space possible (which i totally understand). So she spikes up to 16+ every day after breakfast, bounces around all day and hypos after dinner in the evening, but won't alter anything in her bolus timing/ amount to deal with it (her basal is fine, flat and smooth all night...). Her diabetes team are not much help, all they ever seem to say is 'you're doing really well' but i think she would feel so much better if she could avoid these daily spikes and dips. However i also don't want every conversation i have with her to be diabetes....

 

[Pixeylou]

Hello, my daughter was diagnosed age 4, now 20 and has struggled for the last couple of years to manage her care.

I’m at a loss as to what to do to help her now, I’ve tried every approach possible and she really doesn’t want me involved.

I try my best to support her in surrounding ways and she knows I’m always here if she needs me but the last few years of living like a teenager and not looking after her diabetes are now catching up with her - she has revived a letter today saying she has diabetic maculotherapy and I’m devastated and past myself with worry. My daughter is not talking about it and I can’t see that changing too much.

if anyone has experienced similar I would appreciate your thoughts on what to expect or if you can share any ways in which you manage to cope with the anxiety of the situation would be a massive help.

Thanks to anyone who reads this post. It’s my first one in a long time.

Hi. I have a 19yo daughter who was diagnosed at 12. She has always struggled with her control or, to he more specific, her wanting to control it. She ‘forgets’ to test all the time and even when her phone is pinging saying she is high, she ignores it. Most days she will have spells up into the late 20s. Her most recent HBA1C came back as 10.7 which is the highest she has ever had. She is at uni now and drinking loads, getting wipe out drink most weekends, smoking weed and doing other drugs on occasion too. Like you, I am beside myself with worry. I go to bed every night with that ‘lead weight of doom’ feeling in my chest. Like your daughter, she doesn’t want me involved and, the more anxious I get, the more she is now cutting me out of her life. I really really feel your pain. I genuinely don’t think there is anything we can do! I’ve tried every angle. Nagging, rewards, bribes, education, nothing has made a difference. I don’t understand it. To me, given the tech they have now, it’s so easy to manage! If you want to chat ever and share your feelings please reach out to me. I really do get how helpless you feel.

 

[Inka]

Welcome @Pixeylou Sorry you have such concern about your daughter. It must be very frustrating for you as well as upsetting.

I don’t understand it. To me, given the tech they have now, it’s so easy to manage!

Ah - a definite No to that! The tech makes it easier but it’s far from easy. Type 1 is a huge emotional drain day after day. There are more than 42 things that can affect our blood sugar. We make more than a hundred decisions a day relating to our Type 1 apparently, and - worst of all - you can do everything right and still get bad results; you can get good results one day and repeat the same food, insulin, etc, to the letter the next day, but then get bad results that day. It’s very, very draining, and there no break from it.

That, of course, doesn’t fully explain your daughter ignoring it, but don’t under-estimate the burden of it. Would your daughter join this forum, do you think? There’s lots of support here and people who understand how wearing it is.

 

[trophywench]

For your own health please please talk to whoever you can - that's where the DUK Careline can assist both of you - a physical conversation with an uninvolved person personally, but who understands where you're both coming from, cos you both need hugs and possibly on an ongoing basis because you are both mothers and if you're anywhere near normal, you'll never stop caring about your children until your last breath (unless you get dementia - in which case you will sadly stop caring about everything before that)

All kids DO have to go their own way and nobody on earth really can stop them - not only their parents. I've certainly done some really stupid things in the past - and reaping the consequences of some of them healthwise now in old age. But 'now' was so far away back then, I wasn't going to waste energy considering that when there were so many things I'd rather spend my time on. It's kind of a rite of passage and part of growing up I think. But then, worrying about children is equally a natural rite of being a parent which nobody really expects in advance.

I know my parents loved me - though they also drove me potty at times being so very concerned about whatever it happened to be. My big sis and I both chose how much we told them about whatever from our middle teens - but were much more honest about things with each other after were both happily married and not resident with them. So - make sure they know you love em. And please, please do try not to panic!! It really doesn't help whether it's a burst pipe or anything.

 

[Pixeylou]

Welcome @Pixeylou Sorry you have such concern about your daughter. It must be very frustrating for you as well as upsetting.

I don’t understand it. To me, given the tech they have now, it’s so easy to manage!

Ah - a definite No to that! The tech makes it easier but it’s far from easy. Type 1 is a huge emotional drain day after day. There are more than 42 things that can affect our blood sugar. We make more than a hundred decisions a day relating to our Type 1 apparently, and - worst of all - you can do everything right and still get bad results; you can get good results one day and repeat the same food, insulin, etc, to the letter the next day, but then get bad results that day. It’s very, very draining, and there no break from it.

That, of course, doesn’t fully explain your daughter ignoring it, but don’t under-estimate the burden of it. Would your daughter join this forum, do you think? There’s lots of support here and people who understand how wearing it is.

Ah no, don’t get me wrong! I totally get how shitty it is and the constant of it all, I really do! What I meant is; she uses the excuse that she is too busy/forgets to test sometimes for a whole day at a time but her phone is literally in her hand 24/7 and it’s bleeping away telling her she is high. That’s what I mean. Her testing is so easy. And yet she doesn’t do it. She has really good hypo awareness but she just can’t be bothered when it goes high! That’s what I find soooo frustrating.

 

[Inka]

Do you think she just doesn’t want to stop what she’s doing to do a correction dose? If so, has she considered a pump? My pump allows me to bolus (inject) from my phone. This is very convenient obviously but is also more discreet when out and about. People just think I’m texting or checking my phone.

 

[Pixeylou]

She refuses point blank to wear a pump. She’s 19 and the fashion that she wears would mean that it would be on show. For her it isn’t an option at all. I think one of the issues is that she will wait until a good 30 mins after food to do her injection and won’t test first so not only is the insulin then playing catch-up but invariably it’s not enough because she was already high. I’ve spent the last 7 years trying to talk to her about changing that bit so far she won’t budge. I guess, as well, I’m struggling to let go now that she is at uni as she has relied on le to do it all for her up til now.

 

[Inka]

Hmm, there are various styles of pumps and they can be worn in so many places. They certainly don’t have to be visible. Nobody knows I have one unless I tell them. I’m sure your daughter wears more radical fashion than me, but I can wear a mini dress and my pump isn’t on view at all. More than that, model Lila Moss happily wore her patch pump on display and got nothing but praise.

What you’ve said suggests maybe she feels some shame at having Type 1? She shouldn’t. It was just bad luck she got it. Would she judge her friends if they had medical conditions? I’m sure the answer to that is No.

Yes, injecting after eating is an issue. It’s ok occasionally, but for normal meals she’d be best to inject 10-20 mins beforehand, as I’m sure you know. Again, is she delaying her injection because she doesn’t want people to see? Or is she lacking in confidence to carb count her meals?

Another thought - it’s probable she’s not the only person with Type 1 at her uni. Perhaps some peer support would help?

 

[Bloden]

model Lila Moss happily wore her patch pump on display

The photo's somewhere on the forum - anyone got the link? Perhaps your daughter @Pixeylou isn't aware of famous people who aren't shy about their pumps. Might be a positive for her if she saw it?

(((hugs))) by the way, you have all my sympathy, you really do.