# Supporting parents through the emotional upheaval of diagnosis



## sue63 (Aug 5, 2010)

Hi 

Joel and I had a carb counting lessons today at the hospital as we are moving on to MDI next week. As I sat there looking at lists of food and carbs I suddenly felt really sad and overwhelmed again... I can't remember the care free days of eating anything whenever we wanted. He seemed fed up about it today although he can't wait to change over as he goes low in the mornings and HAS to eat. I know we will get used to it but it seems a steep hill to climb. I feel very tired with it and having just moved house too I could do with a month in the sun!

We asked about new testers today as well and I felt the women was so insensitive talking about testers for people with no feelings in their hands, visual problems etc......we know the complications and are aiming for none of that with good control....won't ask about them again!

It's interesting as the hospital have been great with the practical aspects of diabetes but I feel there is little to help parents throught the initial emotional upheaval. There are some interesting articles on the internet showing parents usually take a year to adjust (though I know this will vary a lot)  That helped me a lot just reading them as I realised my emotions were normal. 

I went back to see our nurse about 2 weeks after Joel was diagnosed without Joel just to talk through things and I felt she was surprised I was so upset!  

I just feel a bit tired with it all today.....it seem hard work at times! x


----------



## Northerner (Aug 5, 2010)

Hi Sue, I think it hits us all from time to time. The changes Joel is about to undertake in his regime will be bringing home the reality of the situation and heighten the feeling of sadness. Joel sounds like he is pretty much on the ball though, so I'm sure he will quickly get used to it. There will be ups and downs to come, but he is fortunate to be diagnosed at a time in history when things are improving all the time, so hopefully there will be less feeling overwhelmed as time goes on.

Not all nurses and doctors hit the right note when dealing with people. Some see us more as patients than people and often don't appreciate how much a chronic illness can affect you. The DSNs I spoke to soon after diagnosis were some of the most wonderful people I've ever met, so I was especially lucky. We did have a talk from a podiatrist though, on a course I attended,  who seemed to be telling us that we were more or less bound to end up with numb feet and amputated toes. Fear might make us 'behave' a bit better, but we also need to know that there is hope rather than inevitability


----------



## Carynb (Aug 5, 2010)

It is hard work isn't it? And you are allowed to feel tired and fed up with it all. It will be so worth all the new learning going onto 4 injections a day.
Our DSN was very good to me when J was first diagnosed, she always asked how I was feeling and never sounded rushed when she then had to listen to me telling her exactly how I did feel!
I have also found great support from other parents of children with Type 1
Keep strong and hang in there


----------



## gem123 (Aug 5, 2010)

hey i know exactly how you feel my daughter was diagnosed about 2 months ago and we just changed to mdi bout a fortnight ago my partner seems to cope better than me i just feel so tired all the time and wish i cud wake up and it will be a bad dream, im sure it will get easier as time goes on for both of us well i hope so anyway we just gotta stay strong take care hun xxxxx


----------



## gewatts (Aug 5, 2010)

Hi Sue - Katie has been on MDI since Easter - it has definitely improved her blood sugars but at times it can be so tiresome, having to carb count everything. Nearly every meal I eat is stone cold as it's taken so long to weigh out all her food. By the time I plate mine up it's gone cold!! It does get easier though - after a while you'll find you can start to make a good guess at how many carbs are in things. I still rely on my salter nutritional scales but I have recently started to guess before I weigh - I am finding that I am guessing correctly a lot of the time.  Good luck x


----------



## Copepod (Aug 6, 2010)

Hi Sue
I wonder if the DSN was just slightly surprised by a mother of a 20 year attending clinic / teaching session with him? Not saying it's wrong, and as you cook when he's home, it makes sense, and is no different from inviting wives to learn about diets for their husbands. I'm not supporting the stereotypes that males can't cook, just know that some diabetes teams do make assumptions... 
I know my mum (in her early 70s) envies my sister and me (early 40s) having male partners who can cook well, as our dad has never really mastered anything beyond boiled eggs or beans on toast. I know that our family represents different generations to you and Joel, but it still perhaps explains the DSN's reaction?


----------



## CarolK (Aug 6, 2010)

Hi Sue, I think in some respects the health professionals dont understand why a 20 year old needs their mum with them, I have always had that problem. My son was dx at 14, but is now 21, and I got fed up being told that he was an adult and responsible for his own illness. Of course he is, but I still have to be there to pick up the pieces when anything goes wrong, and I still cook for him, and generally(my son is typically lazy 21 year old) run around. I always felt I had to explain he wasnt a "mummys boy", but it doesnt matter how old your children are , you cant stop the worry.


----------



## Moddey (Aug 6, 2010)

*Tell me about it*

Sometimes it feels like no one understands how tough it can be. It can get very frustrating when people assume it's just a minor thing.
It's there 24/7 and we can't just take a break.
Of course it's tough for you, you don't have to stay strong and positive all the time. 
Hang in there


----------



## am64 (Aug 6, 2010)

sue i ve been meaning to post because i have been well impressed with your attitude to J's dx ..no matter what age they are we cant help being a mum ...you have sourced the info as much as you can and will continue to do so your his MUM ... its up to J to take it up ...as for the nurse response she surely hasnt got kids xxx


----------



## sue63 (Aug 7, 2010)

am 64...thank you 

I never thought that the nurse might think it strange I attended with Joel but I suppose she might.  That would annoy me a little though as every parent knows this affects the whole family.

What ever age your child is, it doesn't stop you supporting them when something so unexpected and long term enters their life.  We found that having two brains (and sometimes three when my husband came too)  helped as there is so much information to take in. We had so many questions it was good to have two of us to remember them! 

Joel has gone back to Leeds to catch up with mates and he is going to see his new diabetic team who will be looking after him at uni on his own. I would never have attended clinics with him unless he wanted me too ( he is very independent!) but it has been nice to be a team in these early days. 

Just so say some of the wonderful parents on this forum have much younger children than me  and don't get a few days off...I think you are brilliant..it is tiring! xx


----------



## Moddey (Aug 7, 2010)

**

Like you said 





> What ever age your child is, it doesn't stop you supporting them when something so unexpected and long term enters their life.



Yes, with younger children you get no break, but at the same time, you're the boss. Or you should be, at least  I can observe and monitor every bite food and every drop of insulin. 

I can't imagine how difficult it is to try to be the supportive parent with a young adult, when you can't stop worrying. Your children are always your children and you would do anything for them. But you'd also want to respect them as independent adults. How do you do it?

No one should be alone when they are diagnosed, no matter how old they are.


----------



## Patricia (Aug 7, 2010)

Hi there

This will probably sound SO obvious but it's what I thought when i read your initial post on this thread: the medics were insensitive, but OF COURSE you are also having a time of mourning for you and your son. I can't really imagine this going completely, no matter how much time has passed. 

The only real sources of support I have ever found are from those who 'get it' and know. And who have time to open themselves up to emotions and things that can't be solved or resolved completely. As well meaning as so many professionals are ( and of course some are, some aren't!), most aren't trained and don't have time to put themselves in a relative's place. More's the pity. 

Anyway, I just wanted to say that i'm sorry but not that surprised that you didn't 
meet with more understanding. And that you have every reason and right to be at times fed up and upset, and always concerned, about J!


----------



## sue63 (Aug 9, 2010)

Thank you Moddey and Patricia  you have encouraged me and it's great to know you understand totally the emotions involved in this.....it can be isolating if people just don't get it! x


----------



## Adrienne (Aug 9, 2010)

I think for a parent one of the hardest things about diabetes in your child is the emotions from guilt (did I do something wrong type thing) to utter sadness that your child, who you protect regardless of age, has this irreversible medical condition that you or they have to try to control and come to terms with.   

Some great teams do support the whole family as it is a family diagnosis as such but others, like yours, are seriously lacking in the compassion front and are just pure text book people.

I also think that the carb counting completely overwhelms people.   It is a piece of cake but there are ways and means to teach people and give guidance and it take a few weeks of mind numbing hard work and mistakes and bingo you have it so I think that that particular day hit home to you and Joel.  

I think Joel is very luckly you that you are like you are which is caring and concerned and imformed and yet will stand back when he wants and needs you to.   

Stuff any age comments.  I'm 41 and my mum and aunt took me off to the local minor injuries unit the other week as a had a problem with some stitches.  We must have looked a right bunch of wallys and we laughed about it but I felt supported and surrounded by family who wanted to help me.

Take care.


----------



## sue63 (Aug 10, 2010)

Thank you Adrienne 

 you made me laugh about your hospital visit and I totally agree ...supporting people through health problems has nothing to do with age...my mum recently came with me for something routine! It's good to have someone to chat to in those waiting rooms 

Interesting what you said about carb counting as I am overwhelmed...the dietician just bombarded us with 2 hours of information and they struggled themselves as J's insulin requirements are so tiny.  I left lacking in confidence in them and us.....not a great start.  

 I have only really come across text book medics so far...no one has asked how I am or offered J any emotional support.  I know it's a sensitive time but I do think my team falls short on this....maybe it is because J is a young adult. 

I am fortunate I have a few contacts locally with parents and friends who are type 1. One friend sent her mum round to see me after 2 weeks and it was so reassuring to speak to her mum to mum. She reassured me she still has her worries about her daughter 16 years on and the early days were such hard work but it does lessen in time.  I get the impression too she had no emotional support at all. ( Her daughter by the way is in perfect health with a wonderful new baby son and a total inspiration....she is so positive)

We plod on and I hope we get to grips with carb counting..I am sure we will..J's brain is younger than mine and less tired!!!

Take care


----------



## SacredHeart (Aug 10, 2010)

Tiny insulin requirements from some diagnosed as an adult? You're singing from my song sheet there!

I know J is living in Leeds (seriously, get him to drop me a line if he wants to chat to someone who's been there, done that pretty recently), but I forget where you are? 

I get the general impression that emotional and psychological support networks are often pretty much forgotten. I think probably the most important thing to remember is that you are NOT alone. There have been hundreds of thousands of others in the same position as you, and they've probably all thought the same things and wanted to ask the same questions at some point or another.

The great thing is that we're in an age where through the internet and social media, it's much easier for us all to connect with each other.


----------



## Adrienne (Aug 10, 2010)

You'll be fine with the carb counting, really you will.  I do think it is one of the most daunting parts, for parents at least, on how to do it and will you get it right etc.   

Do you have any books for reference.  I use a couple, a lot less now and I don't take them out but I used to.    I'll let you know them if you want, just ask and I'll find them.  You can get them on Amazon.   You should also have a paid of digital scales which will make life a whole lot easier.

You'll get there and Joel will as well.


----------



## sue63 (Aug 11, 2010)

Thank you both  

Adrienne...a couple of recommended books would be great..I think one was recommended to me simply called Carb Counting (!) with visual pictures and I do have some scales...I presume I don't need any special scales??

When I think of the things we eat they are pretty routine and shouldn't take long to work out.

J only needs 1 unit of nrapid for 40g of carbs and a half unit pen to cope with correction doses. It's not much and we will have to test a lot to see what's happening.  

It's funny as even on 2 injections a day he has managed to keep pretty steady and he can miss breakfast (lie ins!) and still have a low reading and feel fine...strange!

THANK YOU for all your help.....it's been inavaluable as you have been there and done it!


----------



## Northerner (Aug 11, 2010)

sue63 said:


> Thank you both
> 
> Adrienne...a couple of recommended books would be great..I think one was recommended to me simply called Carb Counting (!) with visual pictures and I do have some scales...I presume I don't need any special scales??
> ...



Hi Sue, you are thinking of this - there are very good reports about it:Carbs & Cals: A Visual Guide to Carbohydrate & Calorie Counting for People with Diabetes - it gives you pictures of plates of food so you can quickly relate amounts of carbs to portion sizes. Learning to 'eyeball' food in this way can be a great help, especially if eating out when you may not have the opportunity to weigh out ingredients.


----------

