Support for Children who are carers to type 1 diabetic parent/s

[COCOMOMO18]

Hello, I'm new to the forum, but I've had 20+ years of caring for a type 1 diabetic who is 59 years old who is my mum. I am 33 years old her daughter

I have a question to start 'Do you feel as a type 1 diabetic that it has taken over your quality of life?'

Back in 1988 my mum was 27 years old and one night, she went from being a normal mother with 2 young children and a wife, to being very poorly, rushed to hospital, spent 12 days there being stabilised and being diagnosed as a type 1 diabetic. She was put on a regime of 3 daytime insulin doses and a night time dose without any advice, support or care for any of us. Diabetes destroyed our family and ripped us apart as my mum never had any warning signs of a hypo, frequently had accidents and in the words of my dad didn't know what he would come home to find after he finished work (he worked at Royal mail). After 10 years he couldn't cope anymore and made a decision to divorce my mum as he couldn't cope anymore (diabetes wasn't the only reason but had a massive impact) and he asked us children who we wanted to go with. I was 10 and my brother was 12. My brother had no choice but to go with my dad as my brother and mum didn't get on, but it was all up to me to decide. I had to grow up very fast, and I said I needed to look after my mum as I couldn't leave her on her own. Throughout my teens I looked after my mum, not knowing what I would come home to as my dad did, she never had warning signs of a hypo, no support network, just me and mum. As you can imagine it has been really hard for both of us over many years having to cope with whatever was thrown at us, up until 3 years ago we got a diabetes nurse specialist assigned to mum who checks up on her on a regular basis, works with her to try and control her diabetes. Sometimes I feel it is a little too late as the support for us needed to be right from the beginning, but by God I am grateful.

I have suffered many years of mental health, breakdowns, depression, anxiety, and worry because we have had no one to support us through this horrible journey.

I am currently at university studying a degree in child, family, health and wellbeing at Derby. For one of my modules, I have to create a 15mins video which my focus is on children as carers for parent/s with type 1 diabetes, as the topic doesn't seem to come up if I put it in the search box and I am wanting to help young carers just as I was and give them the support that I never had. I am going to contact the diabetes nurse specialist my mum is under to see what she thinks, but if there is anyone out there who is young and struggling then talk about it and don't suffer in silence. It is not only the person diagnosed that need support, it is everyone in the family that diabetes impacts and for me everyday is a worry or a panic but I keep calm and carry on and do my very best, because I have to, which has lead to many sacrifices.

 

[Lucyr]

I can’t imagine that children would need to be carers for type 1 parents today, other than knowing how to call an ambulance in the rare event of a bad hypo. Diabetes knowledge and technology has moved a long way in recent years.

 

[Docb]

Hi @COCOMOMO18 and welcome to the forum.

I know from personal experience just how all consuming a caring role can be. Most people think that caring is all about supporting people who have a physical disability but the reality is that most carers care for people who can operate in the real world generally but would be in trouble if the carer was not ready and available 24 hrs a day to put things right when needed. Being a carer is a bit like having diabetes. Only somebody who has been there can begin to understand what it is all about.

My first thought for carers is to ask whether they have made contact with whatever carer services are available in your area. Here I am talking about services for the carer, not for the cared for. Local authorities have a statutory obligation to provide these. Its very hit and miss in terms of quality, too many cash strapped councils are seeing it as an area to cut costs, but in some areas it is very good. It might be something you could explore, both for your own sake and for your video project.

And @Lucyr, if only that were the case.

 

[COCOMOMO18]

Thank you @Docb I will do all I can to support those in need. I honestly think there are more children as carers than we actually think or know of and that is where I want to spread my support @Lucyr. I want to help those who don't have that anchor of support as I once and still am that child carer, who has done all this care on her own, without the guidance needed in order to love a happy healthy lifestyle. Everything I do is to support my mum as it is difficult for her and always has been, but she will never be on her own as I will be that anchor for her. But I think I can help young people who don't have that available network and it is as much today happening to young people as it was back when I was younger, but we didn't have the Internet, or a forum, or any support from healthcare advisors to get us through it all.

 

[Inka]

Hi @COCOMOMO18 I think you makes good points. Type 1 can be stressful for everyone in the family, especially if the person with diabetes is prone to unexpected hypos. I’m so glad to read your mum has a DSN now and I hope things are improving for her and you.

When I got divorced, I’d been diagnosed for many years, but my oldest child was still upset and worried about me ‘being on my own’ without another adult present, and that was even though my diabetes is well-controlled. It does affect children.

 

[COCOMOMO18]

Thank you @Inka. Yes we are slowly getting there day by day, and everyday is still a challenge. There just doesn't seem to be any support for the young carers who are under the age of 18 and that is my focus as it is happening everyday, and mental health is on the rise but still going un-noticed

 

[Inka]

There have been some news stories about young carers over the past few years. Not just for diabetes - more general stories about responsibility and lack of support. I think Action For Children has some help, but it’s something that’s often not thought about.

 

[trophywench]

It's one of the many areas that 'Children in Need' has deliberately used some of the money they collect, for, since they first got going and more power to their elbow and cash in their bank account for everything they do, I say. If it's only bunging a few pence in a can or ordering a Country File calendar, support them!

It's not just diabetes either, is it? Blindness, epilepsy, mental health and all sorts of other things parents might need support with day to day, which they don't get offered without it becoming a 999 emergency first.

Not ideal by any stretch!

 

[COCOMOMO18]

Thank you @trophywench. Yes lots of things still needs to be done to support these debilitating conditions and that's what I try to do and support in anyway I can.

 

[everydayupsanddowns]

Certainly Children in Need is the time I most frequently seeing this discussed.

It also seems that your Mum had a particularly difficult time, and was not well supported, and that having 'fallen through the cracks' the extent of the difficulties you were facing as a family were not really recognised.

Good luck with your studies, and hope you can make some progress in this area to support others who find themselves in the position you did.

How is your Mum now? Are you using any of the newer technologies to support carers (eg glucose sensors that allow you to remotely 'check in' on what your Mum's BG is doing, and receive alerts or alarms if it is dropping to low levels)?

 

[COCOMOMO18]

@everydayupsanddowns thank you ever so much for this comment, I really do appreciate it and a great support network. I have emailed DiabetesUK and also my local trust to see if they could help me in anyway with getting this topic 'Out there, so to speak' as I do feel it's important, as carers to help them feel like they are not on their own, like we were.

My mum seems to be on an up and downward hill on a daily basis, but with the support of her diabetes nurse specialist she seems to cope ok, but I feel she will never be able to control it or be on her own, and I am struggling to come to terms with this as my life seems to be on hold as she is my priority, and because of my worry, panic, anxiety and depression she is my sixth sense, and because I have cared for her for so long it's hard to detach myself from her and it's almost as if I am the parent and she is the child sometimes.

She is using a freestyle libre sensor, but she doesn't use it as well as she should as she is not very tech savvy and takes her a long time to learn something or do things for herself. I am very grateful that she is on this machine as I do get the alerts that her sugars are low, just wish she did it more often and understood better, but i'm sure this will come with time and management. I will bring this up with her and her specialist nurse as it concerns me that I will never be 'free'. I love my mother to bits and she was the reason I went with her in the first place as she needs looking after and I will never let he suffer alone, but I also would like the opportunity to have a life of my own. This sounds awful but I love her, but i'm suffering too.

Thank you

 

[everydayupsanddowns]

Hopefully the Libre2 which can alert the wearer to scan if BGs are looking too high or low might serve as a useful reminder.

 

[daducky88]

I can’t imagine that children would need to be carers for type 1 parents today, other than knowing how to call an ambulance in the rare event of a bad hypo. Diabetes knowledge and technology has moved a long way in recent years.

In some cases maybe Lucy, but i havent got cgm or a hypo alarm...or kids, or a partner. Survival of the fittest operates.
I thi k thete's a seleclective bias against chronic disease average performers. You get goodies if you're a dreadful performer, but if you have an average n of hypos, use an average n of strips / day and have an average hba1c, you in the category i.e. most diabetics who doesnt qualify for cgm and ai.

 

[daducky88]

Hello, I'm new to the forum, but I've had 20+ years of caring for a type 1 diabetic who is 59 years old who is my mum. I am 33 years old her daughter

I have a question to start 'Do you feel as a type 1 diabetic that it has taken over your quality of life?'

Back in 1988 my mum was 27 years old and one night, she went from being a normal mother with 2 young children and a wife, to being very poorly, rushed to hospital, spent 12 days there being stabilised and being diagnosed as a type 1 diabetic. She was put on a regime of 3 daytime insulin doses and a night time dose without any advice, support or care for any of us. Diabetes destroyed our family and ripped us apart as my mum never had any warning signs of a hypo, frequently had accidents and in the words of my dad didn't know what he would come home to find after he finished work (he worked at Royal mail). After 10 years he couldn't cope anymore and made a decision to divorce my mum as he couldn't cope anymore (diabetes wasn't the only reason but had a massive impact) and he asked us children who we wanted to go with. I was 10 and my brother was 12. My brother had no choice but to go with my dad as my brother and mum didn't get on, but it was all up to me to decide. I had to grow up very fast, and I said I needed to look after my mum as I couldn't leave her on her own. Throughout my teens I looked after my mum, not knowing what I would come home to as my dad did, she never had warning signs of a hypo, no support network, just me and mum. As you can imagine it has been really hard for both of us over many years having to cope with whatever was thrown at us, up until 3 years ago we got a diabetes nurse specialist assigned to mum who checks up on her on a regular basis, works with her to try and control her diabetes. Sometimes I feel it is a little too late as the support for us needed to be right from the beginning, but by God I am grateful.

I have suffered many years of mental health, breakdowns, depression, anxiety, and worry because we have had no one to support us through this horrible journey.

I am currently at university studying a degree in child, family, health and wellbeing at Derby. For one of my modules, I have to create a 15mins video which my focus is on children as carers for parent/s with type 1 diabetes, as the topic doesn't seem to come up if I put it in the search box and I am wanting to help young carers just as I was and give them the support that I never had. I am going to contact the diabetes nurse specialist my mum is under to see what she thinks, but if there is anyone out there who is young and struggling then talk about it and don't suffer in silence. It is not only the person diagnosed that need support, it is everyone in the family that diabetes impacts and for me everyday is a worry or a panic but I keep calm and carry on and do my very best, because I have to, which has lead to many sacrifices.

God bless you and your family. Thats a difficult and sad story, although i imagine not a unique one. For the same reasons, my wife divorced me due to an increasing frequency of hypos from undiagnosed addison's disease on top of t1d. It cant have been easy for her.

 

[daducky88]

Thank you @Inka. Yes we are slowly getting there day by day, and everyday is still a challenge. There just doesn't seem to be any support for the young carers who are under the age of 18 and that is my focus as it is happening everyday, and mental health is on the rise but still going un-noticed

Your project really sounds worthwhile.
I'm a health economist. Funding for predribed treatments whether drugs, devices, tests, behavioural treatments is typically a composite of cost, clinical and economic effect outcomes.

If you need any pointers, ping me. :}

 

[COCOMOMO18]

Thank you so much @daducky88. It is humbling to know there are people out there. I will definitely look into helping more people, because that's who I am.

 

[Docb]

Hi @COCOMOMO18. If you have not already done so, then can I suggest you reach out to whoever provide Carer Services in your area? Google "carer services" and whatever local authority area you are in to find out who provides carer services on behalf of your county council. Provision is very post code dependent but if your local services are good, then they might help you to find ways through that perennial problem of "who cares for the carer?".

PS, I am a carer with diabetes, not somebody who cares for a diabetic, so I sort of know where you are coming from.

 

[COCOMOMO18]

Thank you @Docb, again I appreciate all these words of help and support, as I've never really had them before. I will contact them in the new year and see what they say, you never know till you ask a question. Merry Christmas