What are reasonable expectations and reasonable ways to be supportive for an young adult with a sleep disorder?

Question

My 22 year old child has recently been diagnosed with a sleep disorder, namely, idiopathic hypersomnia. What this means is that he sleeps for long periods of time (in my child's case, sometimes in excess of 16 hours at a time), often multiple times per day, and the sleep is largely not restorative or restful.

My child has had these symptoms grow in intensity over a year or two without remitting. Now, I am in no position to challenge the diagnosis as I am not a doctor, but it seems to me that my child's problem is that he doesn't have any motivation to or doesn't want to be awake. I've tried talking to him about this and he claims that his sleep issues are affecting his capacity to think (he was a straight A student up until his junior year of college) and that the sleep inertia he experiences stops him from wanting to do anything. He has no real sleep schedule--it's a crap shoot whether he'll be up at a given time. He has fallen asleep doing dangerous tasks like driving. Due to his sleep issues, he has dropped out of college. The fact that the skills he has that are employable require degrees and he has no such degree implies he has no real future for employment. He currently lives at home with me and he does not have any source of income. He does do small tasks around the house, such as fixing things that are broken and cooking and whatnot when he is awake. I guess I'm just in denial about his sleep disorder.

My insurance is pretty poor for more exotic illnesses and whatnot so some of the treatments that have been prescribed for my son are not covered due to being classified as experimental or not indicated by the FDA for his specific illness. Some of the prescriptions are very pricey and I can't afford to pay for them. The few that he has been able to try have been absolutely ineffective for my son. Outside of the ineffective or expensive medications, there's practically no treatments for people with my son's condition. The condition itself is also not considered a disability by many, so he's unlikely to get protection from the ADA or to get concessions from any potential employers.

Before the sleep issues, he was set on graduating on time and with good grades, getting out of the house, and being able to support himself financially. Now, he seems to be stuck here with no way out. And not to sound like a bad parent, but I want him out of the house; I just don't want to kick him out in this condition. However, the condition (according to his doctor), in most cases, does not go away or lessen in intensity at all. It seems like he'll be here forever.

How can I accept that my son really has this illness and isn't feigning it to get a free ride? How can I be reasonably supportive of my child while not allowing him to get too comfortable? What things are reasonable for me to expect him to do around the house or towards getting a degree or a job for himself?

I'm not the best writer in the world, so if you would like more information or clarification, let me know and I'll gladly do so.

Answer 1

I have a different sleep disorder. It doesn't prevent me from working, but it causes a lot of sick days sometimes. In order to feel my best, I have to sleep 11-12 hours on weeknights and 14-16 on weekends, which means I often don't have a lot of time for anything other than work. Either that, or I am tired all day.

Let me put it this way. Sleep seems like a luxury when you get a normal amount of it. When it occupies every spare moment, there is nothing luxurious about it. It's depressing, it's boring, and there are a gazillion things I'd rather be doing, but I can't. Fake sleeping would be even more boring. If you're going to fake a disability, there are a lot of better choices.

I also know what it feels like to have a child who will probably always be dependent on you. My 10 year-old daughter has cerebral palsy. That condition has a wide range of outcomes. Some people you can barely tell they have it, and some are utterly dependent on others for their care. It was hard when we started to realize she was going to be in the latter category.

The important thing is to help him live up to his potential, even if his potential isn't what you once thought it was. Look at your issues and see if there's another way you can meet those needs. Perhaps moving to a house where both of you could have more privacy could be an option, maybe closer to public transportation. There are online degree programs where you can watch a video and complete at your own pace. There are jobs like medical transcriptioning that you can do at home and get paid by whatever you finish.

In other words, there is middle ground between the way you wish things were and the way they are now. Try to find it.

Answer 2

This is not medical advice.

1) rule out other factors. Make sure he does not have thyroid problems, sleep apnea, drug or alcohol misuse problems, etc.

2) explain that you are supporting him during his time of illness but that you expect certain behaviours in return.

i) he must try to maintain sleep hygiene where possible.

ii) he must work hard to help you when he is awake

3) he should probably ask his doctor to write a letter with the diagnosis. That might help with disability?

4) he should consider not driving. That may cause him considerable hardship. In England he could use his doctor's letter to get a bus pass that gives him free transport on buses and reduced costs for trains and coaches.

But you need to find support for you whilst also recognising that he has a real illness -he's not faking this- and it's going to have significant impact on you.

http://www.nhs.uk/conditions/hypersomnia/Pages/Introduction.aspx