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my road - Carers UK Forum

my road

Tell us a bit about yourself here.
i care for my son 24/7 he sleeps only 1 to 2 hours at a time then is active all day long,how do others manage with so little sleep,at times i feel why am i putting myself through this wouldnt it be easier to walk away,my story is a long one and due to no fault of my own im now olone and get no help or respite,sometimes i feel there must be more to life than this but i know my son will outlive me so i question the future knowing that everynight i will be awake and survive on the 2 hours sleep a night,at 52 it seems a strain on me pyshically as well as mentally
Stuart, how old is your son, is h dissbled in any way? Has he seen a paediatrician?
Not getting enough sleep is a clear path to illness for both you and your caree. In the long term, you need get something sorted with your son's medical team (I didn't like the thought of it initially, but medication has made all the difference to my son's sleep). In the short term, just cut back on things around the house. Hoovering? - who cares. Ironing? - wear screwed up clothes. You may not be able to sleep during the day, but do not dismiss the restorative power of 15 minutes with your feet up on the sofa. Grab what rest you can, when you can, and let the housework go. And remember, this is a short term survival thing. Don't try to keep this up indefinitely. xx
Hi Stuart and welcome,

That is not sustainable. Sleep deprivation is torturous especially if over prolonged periods.

How old is your son and what is his condition?

Tell us more, when you can.

A recent post from the DS-UK listserv:
Declan was diagnosed with very severe obstructive sleep apnoea at 22.

Within a week or two of starting on CPAP (which took some time to establish to its full benefit) we noticed life-changing improvements in speech, sociability, skills and much more, that persist now, nearly eight years on. The mental health effects were quite marked when we look back, and there was one very worrying incident of confusion when he was out on his own, that could have ended badly, but thankfully didn't. You don't have to be snoring to have sleep apnoea. We did not think Declan would co-operate with a sleep study, but he did enough for the diagnosis to be obvious, and then we didn't think he'd manage CPAP, but he does it very well. He couldn't tell us anything was wrong, but he soon told us that 'I love my life' after getting used to sleeping better.
sorry for taking so long to reply,i care for my son who has epilepsy elhos danlos syndrome (conective tissue disorder) learnning dificulties mental age of about 2 cant walk ocd autistic and double incontinent,ive cared for him for just over 2 years now since my wife walked to be with my sons carer,hes 22 ,my son not the carer,so now theres just us 2 and i care 24/7 for him i get a break during the day as he goes to adult learning,at night his ocd kicks in and he has to sleep right on the edge of the bed so often he falls out,to stop this i put my bed next to his but then he just ends up half in my bed half in his,he sleeps for about 1 to 2 hours solid but then wakes up anywhere from 15 to 20 times a night when i have to get out and cover him back up so alot of the time i end up staying awake from about 3am,we did try medication to help him sleep but it was short lived lasted about 2 weeks,i love my son dearly but often wonder what the outcome will be,ive tried respite but he comes home aggitated so i stopped it,im sure im not the only one to feel like this and i know the old saying of look after yourself but i cant see a way in which i can without him suffering,im 52 and am diebetic so not in the best health to have such a demanding role,i think my hardest part is the lonleyness my son has no speach so normally its me talking for both of us but on the pus side he does make me smile and i love having him with me and to know he is happy it worth all the sleepless nights
Hi Stuart, yours is a very sad story. I am not able to give you any advice as I have not been a carer for very long and my situation is quite different to yours, but I just want to say what a wonderful Dad I think you are. I hope joining this forum will help you. Take care.
Stuart, there are three things you need to do.
1. Ask Social Services for a "Needs Assessment" for your son.
2. Ask Social Services for a "Carers Assessment" for you.
3. Ask your doctor to arrange for a "NHS Continuing Healthcare Assessment" If you don't know what this is, Google it for more information, especially the "Checklist". It's only for those with the highest care needs, but your son appears to meet many of the criteria.
At some time, your son is going to need permanent residential care, or a very, very high quality Supported Living placement. Without knowing where you live, I can't make possible suggestions. Working out what is best for him is a mixture of the standard of care and the proximity to you. Once you have had all three assessments, it will be much clearer what best meets the needs of your son. It sounds as if a crisis in your own health isn't far off. It's much better for all concerned for your son to move out to a place of your choosing before this happens, than have a crisis and he ends up somewhere a long way away, as it's the only place with a vacancy. Try to concentrate on what he needs, rather than what you want. However, once the assessments are completed, you may be offered alternatives, with more carers coming into your home, perhaps night care workers. Maybe you would like to think about whether or not you would be able to manage with this. Some people find the invasion of privacy intolerable. Only you can decide - your wife has clearly waived any right for involvement in this decision by her behaviour.
thankyou for your imput,its funthings but just been able to express my feelings is a great relief,i think for so long ive kept them close to my chest,im old stock and believe you look affter your own so would i ask for him to be placed in a home probilly not i know that things will get harder as time goes on but i couldnt see him in a home ,im going to speak to the doctor and see if i can get more help,its nice to know theres others out there that know what your going through,comming on here feels like at least i can share my thoughts andknow that you understand
Have you ever really looked at what is out there? What will happen when you are too old or ill to look after him? Or when you die? Sharing his care now will make the inevitable, at some stage, transition easier, for both of you. You can still visit him, have him home, make sure his care is good, but benefit from much needed time off.