I don’t think I can do this anymore

[User078]

My DD (17) has very complex health issues and this all started 13 years ago. I gave up my career to become her carer and I love her more than words could ever express. She was admitted to hospital 2 weeks ago and we spent nearly a week in hospital, it was so hard. Although she’s 17 she is still under a paediatrician and will be for sometime, she found it so difficult to adapt to the change and the nurses tried so hard with timetables and visuals but nothing helped. Along with her long lists of other diagnoses we have now been told that she has diabetes, she is on insulin so I have to weigh and carb count all her food, inject her with insulin and then she can eat. I’m finding everything so hard to deal with, we’re in the process of buying a house and we’re struggling with the freeholder. Although I gave up my career I work part time with DH and I haven’t been able to go into work because I’m trying to constantly keep on top of medications and weighing food. I’m trying to work from home but everything is getting on top of me. I miss going to work as it was my escape but I also don’t want to go in because I’m finding it overwhelming just getting out of bed. I’m finding my house disorganised and it feels like we’re all on top of each other at the moment, it feels smaller than it ever has before. I don’t feel I’m explaining myself and to what extent I’m finding it difficult to cope but yesterday, I just wanted to end it all. I wouldn’t have done it but I really felt that I just can’t do this anymore. I love my DD and I have never felt this overwhelmed even with the diagnosis she has been given time and time again but this time I feel angry at life for constantly throwing curveballs at me, I just need a break from life. I’m not expecting anyone to be able to make this better, I guess I just want a rant.

Sending you love, @User078 xxx

I don’t have the answers but you sound like a wonderful mother who loves her daughter immensely and is struggling with a difficult situation. You are only human. Allow yourself to feel crap. Have you been to the doctor, I suffer from depression and on the bad days I wake up and don’t want to be there. Anti-depressants don’t work for everyone but they have helped get me some peace. I hope you feel better soon

Thank you, I’ve been on anti depressants before and they just made me feel like a zombie. I have so much going on with appointments and trying to keep on top of everything that I’m worried if I go back on antidepressants I won’t be able to do anything at all.

Just found your post and I can completely relate. I have a 10 year old disabled daughter. She has a rare genetic disorder and developed nocturnal seizures aged 8 during covid lockdown.
I have suffered from debilitating anxiety ever since. I can't sleep as her seizures at night are so bad that I fear that if I don't watch over her I will wake one morning to the worse scenario,
I don't want to leave my children but I have days (that are becoming more frequent) where I can't contemplate continuing this life with all it's worry.
I don't have any answers but I wanted you to know you're not alone x

In sorry to hear about your daughter. It is overwhelming. My granddaughter was diagnosed with Type 1 diabetes at age 5, on top of other health challenges. My daughter is a widow and she thought she had been dealt enough. A year out with the dx and I watch her with pride, and my granddaughter. I'm going to a class soon to learn about foods, insulin dose, etc. My daughter can eyeball most servings to perfection. Chikdren are resilient. My granddaughter is also very aware of what she can and can't eat, how much, etc. She recently got a dexcom insulin pump. I'm sending hugs, and despite the journey it does get better.

I send you my warmest hug. From one momma trying to make it through to another xx

Another one just wanting to send you a huge hug. My eldest has type 1 (has for the last five years), and I was diagnosed with it shortly after him. It can be SO hard, especially in the early days and especially when you have other medical conditions to contend with too. I'm so sorry. The biggest game changers for us were getting an insulin pump (no more shots 10x a day and it calculates the insulin she'll need for you!!) and a continuous glucose monitor to avoid all the finger pricking - are either of those an option for you? All these years in and some days it can feel so heavy but most days now it's just a whopping inconvenience more than anything else, but the first few months were hard.

But you can do this. You've made it this far and that alone is incredible. I would speak to your GP asap to make sure that you're getting the support you need - caregiver burnout is such a real thing. Happy to talk more if it would help. I'm so sorry you're dealing with this

I just wanted to say thank you @fullbloom87 @Pleasegivemeyourwisdom @YesItsMe44 @octoberfarm, I just came on to mumsnet and saw the notifications, I needed this more than ever today. My DD has been so ill over the last 2 days, she started throwing up Monday morning and but was feeling poorly on Sunday. I think it’s stomach flu, my God I pray that’s all it is. I can’t control how I feel, I can’t stop crying, I can’t cope seeing my child in pain all the time, I just want the pain to stop for her. I’ve been told by doctors over the years at least 4 times to be prepared, I prayed so hard because I knew if I lost her I wouldn’t exist, I feel so selfish that she exists just for me (I don’t know if that makes sense) and exists is all she is doing because she’s in so much pain. She is so beautiful, so very bright even with her cognitive difficulties, she makes me laugh with her sense of humour but she is so depressed because she is in so much pain and I can’t do anything to help her. I needed to hear your stories today, just so I know I’m not the only one, thank you x

I’ve been thinking of you and your gorgeous daughter - what a darling and what a loving momma you sound like xx keep updating us - we are right here xx

We're right here with you @User078 ♥️ I'm so sorry you've both been having such a rough time. You probably know already but just be on the look out for ketones with the stomach flu - insulin runs through our guy like water when he has it and high blood sugars can make them sicker. Keeping everything crossed for you that tomorrow is a brighter day and that she's feeling much better. I know it might not feel like it, but you are doing so well and there is absolutely nothing wrong with having a good cry when everything is so hard

Thank you @Pleasegivemeyourwisdom & @octoberfarm. I’ve been checking ketones all day and they have been ok. she’s currently lying on my bed crying (her dad has just taken over for a moment) she’s been crying all night and it’s been so hard, she asked for us to let her go because she can’t take the pain anymore, she’s only 17 how is this fair? She’s never had a childhood! These abdominal pains she is having have got worse but she’s had ongoing abdominal pains for the last couple of years and scans have all come back normal. I just don’t know what else to do besides hold her and pray nothing happens to her overnight.
Thank you for your support, it feels so much better to be able to just write this out. Me & DH seem to have drifted over the last few weeks and don’t talk as much, I know we’re both feeling the pain but dealing with it on our own.

It's not fair. It's not fair at all. I think sometimes when you're dealing with hard things, people (partners) can kind of go into themselves as a coping mechanism just to sort of survive. I know we do over here sometimes. But that can feel really lonely too. Do you have a GP you could speak with frankly about how hard it is and how much she's suffering? Or any other member of her medical team?

Sending you a hug. It sounds really, really hard.

Bless you op and your husband and dear daughter. Family health issues take a toll on relationships but the important thing to remember is you'll come together eventually. Marriage isn't always about being close it's about supporting from a distance even if it's just by going through the same issues as one another. My husband sleeps on the sofa so our daughter can sleep in with me as I can't leave her alone when she's having seizures. It's been tough but it's how we survive.
Big massive hugs to you xxx

If it helps, my friend’s DD has blossomed since she has been in sheltered accommodation. We’re in Aus, so I don’t know if they have that or what they call it there. They have adult mentors on site 24/7 to assist with meds and cooking and to help them with shopping, etc. It may not be the end of the world. Have you got a social worker to discuss this as a possibility?

Why is this care all down to you. The girl is 17 and needs to learn this stuff herself she's plenty old enough. I have family who have had type 1 diabetes since infancy and have gotten to grips with their own diets much much earlier. The sooner she learns the better. It's for her own good

If you read ops posts this isn't just diabetes. It's diabetes in top of what sounds like complex sen and physical disabilities

Thank you @CoachBeardsJane.
@Octosaurus DD is 17 but got very ill with a neurological disease at the age of 4, this left her with residual brain damage. Although she can talk, she has cognitive impairments and is not of a level of a 17 year old, she has other needs to such as bowl and bladder dysfunction, adrenal issues, hormone deficiencies. I would love nothing more than for her to get a grip of all this herself but it’s not just the diabetes.

@Fraaahnces as part of DDs transition to adult services we are looking at assisted living but this won’t be for a good few year yet not that I would send her away right now even if it was an option. I can’t cope but I hope my only option isn’t to send my DD away so that I can cope, I want to be able to care for her, love her, be with her, ease her pain and cope with it all. I know that later in life assisted living will help her immensely but right now I need to cope with it because I want to and I’m so angry that I can’t cope with it. Why as her mother can I not cope, I should be able to care for her without breaking down, she is going through so much more than I will understand or feel so why can’t I be strong? I feel like such a failure.

Oh honey, you’re exhausted. Utterly wrung out. This has been 24/7 for too many years. Nobody should be expected to “cope” just because they love their kid. Have you looked into respite? I think you sound like you’re utterly on your bones. Go to your GP and speak frankly about how you feel and ask what help is available. (I know it’s not enough, but it’s a little bit of something to get you through.)

just Checking in with another wee hug xx

Thank you @Pleasegivemeyourwisdom. DD slept pretty much all day yesterday, I’ve just kept a close eye on her, we have an appointment today with the diabetes nurses I’m wondering if she has diabetic gastroparesis. It’s the only thing I can think that maybe causing such bad abdominal pain. It’s funny how you become an expert in research when you have a child that has complex health issues, I don’t know if it’s a good thing or a bad thing because you don’t have a medic confirming or dismissing what you are looking at so you end up stressing more about something that may not even exist.
Thank you for taking the time out to check in, after DD fell ill most of my friends carried on with their lives and lost touch, mumsnet seems to be a place you can just get things of your chest. Thank you

Sometimes there’s a bit of a tummy ache when adjusting to the new diet and the drugs. Best that you tell the nurse everything. The constant intrusion of finger pricking and not being allowed to eat whatever she wants whenever she likes is going to be hard for her to cope with.

I just wanted to give an update and thank everyone who has been so supportive over the last few days. DD was sent to the hospital by the diabetes nurses as they were also worried something wasn’t right with DD having such sever abdominal pains. She has been diagnosed with a UTI and has been given antibiotics. Unfortunately, as she has the UTI the root of the abdominal pains hasn’t really been found but the doctor said that it might have been exacerbated by the UTI. It’s been a long day and I’m so glad we’re back home and it wasn’t another hospital stay, the diabetes nurses were amazing, they listened and have set up another appointment to see what they can set up in place to support me and DD overall. I just want to say thank you to everyone for their kind words and support.

Oh @User078, it sounds like quite a day but I'm so glad you finally got some support. I really hope the UTI passes quickly and that things start to look brighter moving forward now. Hope you're sleeping a little bit better tonight

How are things my love