Sleep issues — Scope | Disability forum

Sleep issues

Hi, recently my daughter suffered a horrendous stroke on 29th May - still in hospital now but recovering as best she can after 4 life saving surgeries in 5 days. She’s had 12 surgeries so far. She is really struggling to sleep for longer than an hour. I am really struggling myself with this, I don’t get a break with the nurses not really helping me and she’s relentlessly unsettled which im sure is 100% not her fault and down to the damage caused but I don’t know how to help her or what to do. I feel so useless- before her stroke she was an amazing sleeper which i think is so hard to get my head around now- any advice would be great to hear from you - thank you 


  • April2018mom
    April2018mom Posts: 2,869 Member
    Hello @mumof2_lovethem

    Welcome to the forum!

    Who can you complain to about the nurses? Have you contacted the head of the nursing team or not to express your dissatisfaction? A stroke can cause regression in all kinds of unusual ways. I’d send a polite email with your concerns to the head of the department or unit tomorrow morning. 

    What kind of sleep issue is it? Have you seen a consultant? If it is a breathing problem, you might want to ask the doctor to order a sleep study. At the very least, you should request a referral to a sleep medicine team. Make sure that your questions are answered. Bring a pen so you can take notes as well. 

    Keep us updated. 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,948 Disability Gamechanger
    Hi @mumof2_lovethem and welcome to the community! I'm sorry to hear what has happened, I can only imagine how distressing this has been for you and your family. Depending on your daughters age, is she at an age where she can be referred for counselling? The combination of a stroke and prolonged hospital stay can be very distressing and could be one of the factors as to why shes having trouble sleeping.

    From my own experience, I went through something quite traumatic last year and my sleep was both erratic and very disturbed. I still have sleep issues to this day but nowhere as severe as they were a year ago, my sleep issues are caused by psychological distress.
    Disability Gamechanger - 2019
  • mumof2_lovethem
    mumof2_lovethem Member Posts: 2 Listener
    Thank you both for your replies. My daughter is now 21months old. 
    The nurses have pretty much said I’m to do all the work in prep for returning home. We were at great Ormond street hospital for 14WKS and 2wks ago went back to our local hospital and waiting for a bed at a rehabilitation centre for the next 3months. Hard when your on your own if I were at home my hubby could help etc but I’m literally exhausted- it’s been such a long journey so far and I don’t see her sleep issues getting any better if not it’s just getting worse as the days go by. :-( I feel bad for her, she’s exhausted but just can’t sleep, they give her a sedative and melatonin but they don’t seem to do anything . 
  • April2018mom
    April2018mom Posts: 2,869 Member
    Make sure you are listened to. You are a valuable member of the team and your opinion should be respected. Can you ask for different nurses or not? 

    Ask the consultant to help. 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,948 Disability Gamechanger
    I'm on melatonin and although it helps me get to sleep, it doesn't lead me to having a "good nights' sleep. I'm really shocked at how the nurses have this approach, I understand that you would need to prepare for when your daughter comes home but you shouldn't be left to prepare on your own, they need to help.

    Has your daughters doctor/consultant suggested anything for her sleep issues?

    As a community, we may not know the answers but we will always be here for you if you need someone to talk to.
    Disability Gamechanger - 2019
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,623 Disability Gamechanger
    Hi @mumof2_lovethem . I'm so sorry to read about what both you & your daughter are going through.

    I was in hospital with our youngest daughter for the first 3 weeks of her life, getting only about 3 hours sleep a night. I truly don't know how you've managed to cope so far. We also had 2 stays in Gt Ormond St., but of much shorter duration.

    As mentioned above, please do ask her Consultant for help, for both your little one & you.

    Please 'don't feel useless;' your very presence will be helping her, & you are doing the very best that you can.

  • [Deleted User]
    [Deleted User] Posts: 0 Courageous
    Hi @mumof2_lovethem

    Sorry to hear that you're not being listened to or properly supported. There's a charity called Cerebra that support children with brain conditions and their families. They offer a number of different parent guides and they also have a Sleep Service that may be helpful to you. I've included the link below.

    Hope this helps and all the best x
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,566 Disability Gamechanger
    Hi @mumof2_lovethem and a warm welcome to the community.

    Thank you for taking the time to share such difficult information with us and I am sorry to hear what happened to your daughter and that support hasn't been at the right level.

    Different Strokes have a child pack, which you may find beneficial to look through.
    The Different Strokes ‘Information and support-line’ allows you to speak to adult stroke survivors about your experiences. We can also put you in touch with other parents to share coping tips and strategies. Call 0345 130 7172 at any time and request a call from another stroke survivor Queries can also be sent by email to [email protected] 
    Also, it might be worth letting the nurses know that you are finding things really difficult. It's a big change for everyone involved and I imagine a lack of sleep is making things even more difficult for you all.

    Please do keep us updated and let us know if there is anything else we can do to help. :)