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Parents of teens with chronic health issue.....moving out?


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DD18 has a chronic health issue that results in a lot of fatigue.  She has about 5-7 good hours a day, when she can do light activity. If she has stress or heavy actiity that drops rapidly to about 4 hours and she often needs a nap after.  She will often sleep 10 hours be awake for half a day, sleep another 10+ hours.

 

She has graduated high school and pretty much lives at her boyfriends.  She comes home for a hour or less a day to pick up clothes and medical supplies.  Our home is very stressful (dd10 is autistic) so I support her not being at home.

 

She has a job and works about 20 hours a week.  One week when they needed her for 30 hours, it was all she could do and almost didn't make it to work one day.

 

How do you deal with them being gone, but also trying to help manage their illness? I try to text and call dd, but she is usually sleeping or not paying attention to her phone, so she doesn't answer.  Today I called/texted 5 times, once an hour, between 10am and 2 pm, because she needed to go to the college by 3pm.  She woke up at 230. UGH! 

 

I am getting frustrated because she is not getting some things done for college, and they will bite her in the butt if she doesn't get them done.  If she was at home, I would just go wake her up and make her do them, and then she would go back to sleep.  Since she is not here, I can't do that. 

 

For comparison....2 years ago she was carrying a full course load in high school (hard classes with a high A average), cheerleading full time for one team and going to a second set of practices/games to help another team.   It is so hard to see her life turn upside down and continue to spiral downward.  Yesterday she told me that if she ends up In a wheelchair, she wants a pink one. :crying:

 

She desperately wants to go to college and needs it mentally.  I am not pushing it, she wants it.  She is enrolled part time and taking hybrid classes so she will only go 2 days per week.  She can drop her work down to 15 hours and still stay employed. I just feel lost on how to help her manage her illness and push her when she needs it, to make sure she can continue to move forward...even if it is baby steps.

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Ask her how she wants you to handle it.

 

ETA: I mean the reminders and stuff.

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That is what we did this spring.....and it didn't work. LOL I would text reminders to her but with her brain fog, she would forget as soon as I sent them.

 

She kept saying "I've got it"...and she didn't.  She lost out on scholarships (missed deadlines to accept them), messed up her financial aid (didn't check her personal email--her FAFSA was kicked out for verification) and almost got in a situtaion that would have cost her over $3000 in loans with the university.  The universtiy was telling her '....it should all work out, don't worrry about it. Just go ahead and register and we will know 21 days after school starts.'  She didn't realize that means that they will just let her sign loan papers for whatever she didn't have covered....which ended up being nothing.  (She changed to part time status due to her health and lost ALL of her funding). 

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She is good with work because she goes to work and they tell her what to do.  (Grocery store stocking/checker) She always works nights so she is most likely awake before work, or her boyfriend is home and reminds her.

 

She is good with school because she keeps a planner with assingment dates and checks them off. She always does homework on the same day and same time so she doesn't forget.  She will map out entire days, so she can do an hour or two of homework and then take a break, then start again.  It is easier for her to do it this way, so she doesn't forget.

 

It is just the more general, everyday life she forgets.  She missed 3 chiro appointments in a row, because she either slept through them or forgot I told her/texted her about them. They were on the same time/day of week as they have been for months.  She wanted to go, she just forgot. 

 

She will set alarms to remind her of tasks/appointments.  But about 10% of the time she makes a mistake AM/PM or day of the week.  Or she will turn them off and then forget what she was doing. The brain fog causes the errors.  And since her sleep is so off, she doesn't have an internal feeling of time of day to help prompt her along.

 

ETA: you know how you can walk into a room and forget why you were going there?  That happens all day, every day for her.  

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She needs to develop coping skills just like she has for homework and work.

 

Appointments-she writes them down on a calendar as soon as you tell her about them, just like she takes care of her homework.

 

It sounds like she needs physical support, like someone to wake her up when needed so she doesn't miss things, so can someone at her boyfriend's house do that?

 

It also sounds like she needs support for administrative tasks, so she needs to either let you or boyfriend help. And she should immediately write all dates in the planner. She should be handling the rest of her life like she does her homework--write it down and map out a plan and enlist boyfriend's help (maybe they could get in the habit of checking her planner every evening before bed?).

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She needs to develop coping skills just like she has for homework and work.

 

Appointments-she writes them down on a calendar as soon as you tell her about them, just like she takes care of her homework.

 

It sounds like she needs physical support, like someone to wake her up when needed so she doesn't miss things, so can someone at her boyfriend's house do that?

 

It also sounds like she needs support for administrative tasks, so she needs to either let you or boyfriend help. And she should immediately write all dates in the planner. She should be handling the rest of her life like she does her homework--write it down and map out a plan and enlist boyfriend's help (maybe they could get in the habit of checking her planner every evening before bed?).

I agree.  I just don't know how to do that, if I am not there.  The boyfriend can remind her and does, but from my last conversation with him, I think he kind of just lets her do her thing..which is sleep.

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Is she putting appointments, such is the chiropractor, and tasks, such as going to the college, in the same planner as her homework assignments?  If that planner is working for her, I would encourage putting everything there.  Personally, I find having multiple systems, apps, and reminders difficult to manage.  

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I recently bought my daughter a visual schedule app for an apple watch. It's made by Enuma. You pair it with an apple phone. You put the info in the phone, and it shows up on the watch.

 

If you bought something like this, then you could be in charge of setting up the schedule. I think this could give her more autonomy since the watch will remind her instead of you. Plus, since she would be wearing the watch, it would be harder to ignore the reminders and alarms.

 

I haven't used the app yet, and there may be a better one for your situation.

 

Anyway, it's just a thought of something that might help.

 

https://itunes.apple.com/us/app/children-with-autism-a-visual-schedule/id1037037909?mt=8

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I agree. I just don't know how to do that, if I am not there. The boyfriend can remind her and does, but from my last conversation with him, I think he kind of just lets her do her thing..which is sleep.

I think you're nearing a point where you need to let them sink or swim. I'd probably sit them both down and brainstorm, with the understanding that you'll be taking a step back. I'd probably also point out that true love does what is best for the beloved (including waking them up when needed) and since she's not really living under your roof anymore you can't hold responsibility for the things that require a physical presence (getting up on time, remembering appointments, etc.). I'd also tell them if she wants help with the college stuff, she needs to schedule a time with you for help.

 

And when they left, I'd probably cry because being a parent is so dadgum hard.

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I would make an appointment with her to show her how to set up and maintain something like google calendar with multiple reminders.  We use that here - each of us has our own calendar (among others) and can write to it.  You can set up phone pop up and e-mail reminders.  And I'd have a serious discussion about how she would like you to be involved if at all.  If she's not receptive and keeps ignoring you, she may need to sink or swim with it for a bit.  :grouphug:

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If she's not going to live with you, your assistance is not that effective. 

 

I would sit down with the dd and boyfriend. I'd explain everything that has worked. I'd explain approaches that haven't worked. I'd try to get boyfriend to clearly understand that if he wants to take on the role of assisting dd and what that entails (that he must actually wake her ect.). Then I think you have to back out. Doing so might mean bad results academically. Doing so will probably mean appointments missed. 

 

You can make a plan that includes an appointment for the three of you to assess progress  quarterly. 

 

 

 

 

Sidenote: Personally, I think being dd's assistant for these things is a massive responsibility for a 18-20yo boyfriend (I didn't see his age). Men in this age bracket are often barely handling their own typical executive functioning. The issues here involve taking on responsibility for a lot of details beyond the typical stuff in day to day life for an 18 yo. 

 

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I agree. I just don't know how to do that, if I am not there. The boyfriend can remind her and does, but from my last conversation with him, I think he kind of just lets her do her thing..which is sleep.

Well her boyfriend isn't her mom, so that makes sense. I think that would be a dandy way to ruin a relationship if he did.

 

Idk. Have you discussed that if she wants to live on her own, that not needing mom to text to get out of bed is part of that? I don't intend that snarky, but it's just reality. You don't know how to get her out of bed on time and how to make her do what needs done in time when you aren't there because that's not really possible. She has to figure out a coping skill to manage it on her own. It's not reasonable or fair to expect the boyfriend to take on that duty either imo.

 

At best, I think maybe it would help to set up a day of the week where the two of you get together in person to get some things done. An agreed arrangement where you will meet up with a list of objectives that she needs help from you to complete that week.

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If it is any consolation, these issues are not isolated to college-aged students with ongoing medical issues.  Although the medical issues complicate matters, many college-aged students go through a period of adjustment and learning what will work for them to get up, go to an appointment, and take care of things once mom isn't there to make them do it.  It often takes some trial-and-error on their part to determine what type of planner, reminders, scheduling, and alarms will work for them and it often takes suffering some of the consequences of not getting things done for the lessons to sink in.

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If it is any consolation, these issues are not isolated to college-aged students with ongoing medical issues.  Although the medical issues complicate matters, many college-aged students go through a period of adjustment and learning what will work for them to get up, go to an appointment, and take care of things once mom isn't there to make them do it.  It often takes some trial-and-error on their part to determine what type of planner, reminders, scheduling, and alarms will work for them and it often takes suffering some of the consequences of not getting things done for the lessons to sink in.

Shoot, I'm trying to figure this stuff out. 

 

I think the main problem is that she isn't moved out. She's having sleep overs. But because she's still "living at home", she is still your responsibility. But she's not there. So you can't help her. 

 

If she wants to be on her own, she needs to be competent. Which it sounds like she's not. 

 

She needs support and care. A husband could be expected to take on that role, but she doesn't have one. She has a boyfriend. It's just not a solid, committed relationship which will provide the kind of support she needs. 

 

To me, it seems that if she still wants and needs your help and support, she needs to physically live in your home. If/when she can stand on her own feet, she can move out. If/when she has a partner who is willing and able to take on her care, she can move in with them. She does not have that now. 

 

IMO you need to set some limits. There have to be times when she is available to you, in the home, where you can help her. If she is not willing to do that, she needs to have supports in place. If your home is not appropriate or desirable, you might need to look into some kind of halfway house, group home, assisted living type of situation. 

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If she has around 5 hours per day of functionality and works 20 hours per week, then assuming 5 workdays weekly, she only has 1 hour per workday for everything that is not work:  eating time, showering etc, time with bf, and managing all the administrative type stuff, medical appointments and daily self-care related to her condition.  To me that sounds unrealistic.

 

If she cut down to 15 hours per week of work now, used the 5 hours cut from work as totally devoted to administrative tasks--maybe as 50 min per day, 6 days per week (admin tasks are often stressful and deplete energy and executive function, so I'm thinking almost every day or every day, but not huge blocks of time --though if it is better for her it could be bigger blocks less often)--scheduled time in her appointment calendar given as much priority as she gives to a paid job, and if she also set up a very consistent sleep / wake schedule perhaps she could achieve a regular daily pattern that she could maintain long term. 

 

Maybe ask her if she could work out something for herself to aim for, like sleep from 8pm to 7am, do things for 3 hours, nap 10am-5pm, do things 5pm to 8pm, consistently? That is 6 hours on per day, but not at random times. And maybe one could be a very laid back hour with bf.

 

Then with that or something like that consistent, maybe she could add on a single one day per week class on a non-work day. Etc.  

 

 

 

 

Edited by Pen
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She is good with work because she goes to work and they tell her what to do. (Grocery store stocking/checker) She always works nights so she is most likely awake before work, or her boyfriend is home and reminds her.

 

She is good with school because she keeps a planner with assingment dates and checks them off. She always does homework on the same day and same time so she doesn't forget. She will map out entire days, so she can do an hour or two of homework and then take a break, then start again. It is easier for her to do it this way, so she doesn't forget.

 

It is just the more general, everyday life she forgets. She missed 3 chiro appointments in a row, because she either slept through them or forgot I told her/texted her about them. They were on the same time/day of week as they have been for months. She wanted to go, she just forgot.

 

She will set alarms to remind her of tasks/appointments. But about 10% of the time she makes a mistake AM/PM or day of the week. Or she will turn them off and then forget what she was doing. The brain fog causes the errors. And since her sleep is so off, she doesn't have an internal feeling of time of day to help prompt her along.

 

ETA: you know how you can walk into a room and forget why you were going there? That happens all day, every day for her.

If she's good with the planner, perhaps it also needs to be her daily tool for life tasks too. Maybe she could make a box off to the side for each day for "tasks" to get done. Or reminders to "follow up on." It's nice you're helping her. I suppose she'll have to figure out a plan that works since you won't be around all the time. She just can't say "I'll do it." She should say "I've written it down" maybe that will help her.

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I think you're nearing a point where you need to let them sink or swim. I'd probably sit them both down and brainstorm, with the understanding that you'll be taking a step back. I'd probably also point out that true love does what is best for the beloved (including waking them up when needed) and since she's not really living under your roof anymore you can't hold responsibility for the things that require a physical presence (getting up on time, remembering appointments, etc.). I'd also tell them if she wants help with the college stuff, she needs to schedule a time with you for help.

 

And when they left, I'd probably cry because being a parent is so dadgum hard.

When a child is ill, letting them sink is unthinkable to me, no matter their age or living situation.

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Would a device like an echo dot or show work?? The dot could be carried in a backpack.

You can sync them with calendars (google for example). And make maybe an account you can both have access to (TapandDD@gmail.com so you can enter reminders, appts and so can she and you can both see them).

Pair that with a wearable device for reminders, alarms. And just make entries: "Monday xx/xx meet mom at home @9am to complete ________ paperwork" or "Tues xx/xx at 8am chiro appt" (and set it to remind her night before plus 1 hour before for example).

Basically use tech to teach her to manage.

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I have a dd(20) who has a chronic, progressive, incurable health issue. So HUGS to you (and dd). I don't know what your dd's health issue is, but I'm just going to throw some ideas out there . . .

 

1. Have you explored all treatment options? Second opinions, specialists in related fields, dietician/nutritionist, physical therapy, sleep studies, etc? Some doctors are great at treating conditions within their specialty, but not so great at looking at the whole person.

 

2. Said very gently - depression can also accompany chronic health problems (at any age). Young adults *should* be healthy and energetic and exploring the possibilities for the future. A counselor/psychologist can help reconcile the "should haves" with the current limitations - and keep an eye out for signs that more counseling or perhaps a medication might be helpful.

 

3. Given that your dd only functions well for 6-7 hours a day (on a good day), working + school + living with serious boyfriend + health issue sounds like A LOT! Is she cooking, cleaning, grocery shopping? Trying to spend quality time with her boyfriend? And school, work, doc appointments with all of the travel time to and fro? It might just be too much!

 

4. As her mom, well it's just hard! Maybe let her go a little bit - wait for her to ask you for help. Make sure she gets to super important medical appointments? Let her know you support her independence, but you are there if she needs you.

 

Much love to you and your dd.

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I have a dd(20) who has a chronic, progressive, incurable health issue. So HUGS to you (and dd). I don't know what your dd's health issue is, but I'm just going to throw some ideas out there . . .

 

1. Have you explored all treatment options? Second opinions, specialists in related fields, dietician/nutritionist, physical therapy, sleep studies, etc? Some doctors are great at treating conditions within their specialty, but not so great at looking at the whole person.

 

2. Said very gently - depression can also accompany chronic health problems (at any age). Young adults *should* be healthy and energetic and exploring the possibilities for the future. A counselor/psychologist can help reconcile the "should haves" with the current limitations - and keep an eye out for signs that more counseling or perhaps a medication might be helpful.

 

3. Given that your dd only functions well for 6-7 hours a day (on a good day), working + school + living with serious boyfriend + health issue sounds like A LOT! Is she cooking, cleaning, grocery shopping? Trying to spend quality time with her boyfriend? And school, work, doc appointments with all of the travel time to and fro? It might just be too much!

 

4. As her mom, well it's just hard! Maybe let her go a little bit - wait for her to ask you for help. Make sure she gets to super important medical appointments? Let her know you support her independence, but you are there if she needs you.

 

Much love to you and your dd.

My daughter has POTS and possibly Ehler-Danlos. 

 

1. We are always on the look out for new ideas/doctors/treatments.  She has seen so many specialists on the way to her diagnosis, that it became a weekly occurrence for a while.  He issue is fairly specialized and there are only two real specialists in our area.  Her cardiologist (who diagnosed her) and her neurologist.  Her neurologist doesn't have a practice specializing in her dx, but is the one who treats her.  This MD was both a resident and fellow at the Mayo clinic, working under a specialist for my daughters condition.  It was a fluke that we met her in trying to figure out my daughter's chronic pain issue.  Funny that you mention the sleep study....she has one scheduled in 2 weeks.   Her neurologist is amazing, but POTS is a spectrum disorder and it can be really, really difficult to treat.  There are several different kinds and know one really knows what causes it. 

 

2.  We looked at depression early on. Since dd10 has Autism and our house is stressful, I wanted dd18 to have a safe place she could vent and say whatever she wanted.  A place for her to get good advice about life's issues, not just from her teen friends.   She saw a great therapist for a while and she says that dd is very well adjusted and not depressed.  DD went weekly for about 6 months stopped, went for a couple more months around a major life change,  and stopped again.  I offer about every 6 months to have her go back again, and she hasn't felt the need for few years. It is always a good thing to keep in mind though.

 

3. She is pushing the limits of what she can do.Her issue is rapidly taking her life away and she is trying to hold on to the last bits as she can.  Her issue could spontaneously resolve or she could end up bedridden.  No one knows how it will play out for her, but she has been in a steady decline for 2 years,   Her 19yo boyfriend really takes great care of her.  He and I don't see eye to eye on everything, but he truly loves her and takes good care of her.  For household chores, he cooks and cleans, she assists.  LOL  There are times they tell me that she lays on the floor and talks to him as he cooks her dinner or she will sit in a chair and help him prep sometimes.   He just got over a very, very bad case of mono this past spring, so he understands fatigue on a personal level.  She works in a grocery store, so she will shop/pay for groceries and bring it home. In return he cooks for both of them. She helps clean and do basic chores when she can. They both like a very tidy house. She is trying to not let her health stop her completely and trying to push the limits of what she can do, so she doesn't continue to slide down faster that she has to.  She doesn't want to become too weak to do anything at all, so she is trying to stay strong and active.  She has about 1/2 of activity level she had  12 months ago. She knows she is declining at a pace that may leave her in a wheelchair.  This is part of why college is so important to her.  SHe has too feel like she is still moving forward.  Even with baby steps, at least she is going in a positive direction. 

 

4. This is where we are right now.  I did let go. I needed her to try to do it all. She was pulling away from me, so I backed off almost completely for about 5 months. She finally admitted she needs my help.  I am just trying to figure out what that help is, and where the line is between helping/enabling.  If she weren't sick, I would say....."you're an adult, take care  of yourself and let me know if you need me"  But, with a chronic illness, she doesn't always know she needs me, until it is too late.  There isn't much help I can do After she misses a deadline/appointment. The appointments keep her walking, without them she walks less and hurts more. That means she sleeps more and is more likely to miss more appointments. The more failures she has, the worse things are for her, and the further down the spiral she goes.  Like with losing her scholarship.  When my son messed up his scholarship one term, he knew it meant he had to work extra for a few months to pay for tuition.  Bummer for a normal kid, but a good life consequence when it wasn't too much money at stake.  For her....she can't just work more to pay it back.  It means she doesn't get to go to school at all or would sign a loan for a degree she may not even be able to finish.  If things continue like they are, she could end up totally disabled in a year or two.  This is where I think that I need advice from parents who have kids with chronic health issues.  They can't just 'suck it up'. But where is that line and how do you know when to save them? 

 

 

 

:001_smile: Much love back<3   Thanks for taking the time to respond!

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Would a device like an echo dot or show work?? The dot could be carried in a backpack.

You can sync them with calendars (google for example). And make maybe an account you can both have access to (TapandDD@gmail.com so you can enter reminders, appts and so can she and you can both see them).

Pair that with a wearable device for reminders, alarms. And just make entries: "Monday xx/xx meet mom at home @9am to complete ________ paperwork" or "Tues xx/xx at 8am chiro appt" (and set it to remind her night before plus 1 hour before for example).

Basically use tech to teach her to manage.

This is an interesting idea!  We use texting all the time, but maybe a watch so it is more in her face that her phone? Especially if I could set the reminder myself on my computer. LOL      just something to say :seeya:"hey, don't forget mom at 3" LOL   OK, I know in reality she needs to do it herself.....but boy it would be so much easier if I could do it for her.  LOL 

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If she's good with the planner, perhaps it also needs to be her daily tool for life tasks too. Maybe she could make a box off to the side for each day for "tasks" to get done. Or reminders to "follow up on." It's nice you're helping her. I suppose she'll have to figure out a plan that works since you won't be around all the time. She just can't say "I'll do it." She should say "I've written it down" maybe that will help her.

I agree, but the funny thing is that the planner only works for things that she does at her desk.  Otherwise she forgets to check her planner. LOL  When she has a homework day, she will keep checking her planner for the next thing to do, until she is done.  The she puts it away till the next homework day.  She has tried several formats, but it only seems to work for homework for her. 

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If she has around 5 hours per day of functionality and works 20 hours per week, then assuming 5 workdays weekly, she only has 1 hour per workday for everything that is not work:  eating time, showering etc, time with bf, and managing all the administrative type stuff, medical appointments and daily self-care related to her condition.  To me that sounds unrealistic.

 

If she cut down to 15 hours per week of work now, used the 5 hours cut from work as totally devoted to administrative tasks--maybe as 50 min per day, 6 days per week (admin tasks are often stressful and deplete energy and executive function, so I'm thinking almost every day or every day, but not huge blocks of time --though if it is better for her it could be bigger blocks less often)--scheduled time in her appointment calendar given as much priority as she gives to a paid job, and if she also set up a very consistent sleep / wake schedule perhaps she could achieve a regular daily pattern that she could maintain long term. 

 

Maybe ask her if she could work out something for herself to aim for, like sleep from 8pm to 7am, do things for 3 hours, nap 10am-5pm, do things 5pm to 8pm, consistently? That is 6 hours on per day, but not at random times. And maybe one could be a very laid back hour with bf.

 

Then with that or something like that consistent, maybe she could add on a single one day per week class on a non-work day. Etc.  

We just talked about this 2 days ago.  She is going to try to commit to a schedule for 2 weeks and see if that helps.  She goes on a 10 day vacation in mid Sept, so it will be a good reboot point. 

She has asked her employer to cut her work hours to the minimum in the future. She was planning to work more this summer to save money for school, but her fatigue is making things worse not better.  Part of the problem is her boyfriend's schedule is chaotic too. Between work and college (he already started back she has a month still) some days he leaves the house before 8am, sometimes it isn't until 2pm. Sometimes they in bed at 10pm and sometimes it is 2am. She feels the best at night, so she tends to stay up later. 

 

I am going to ask her to consider staying at home for 2 weeks and to try to go back to the way life was when she was last stable (2 years ago).  Getting up in the AM, doing school, a specific diet an weight bearing exercise (she used to be a cheerleader and threw people in the air every afternoon LOL) .  We will have to modify it for her current abilities but to try to schedule the key points in her day to see if that helps.  

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Shoot, I'm trying to figure this stuff out. 

 

I think the main problem is that she isn't moved out. She's having sleep overs. But because she's still "living at home", she is still your responsibility. But she's not there. So you can't help her. 

 

If she wants to be on her own, she needs to be competent. Which it sounds like she's not. 

 

She needs support and care. A husband could be expected to take on that role, but she doesn't have one. She has a boyfriend. It's just not a solid, committed relationship which will provide the kind of support she needs. 

 

To me, it seems that if she still wants and needs your help and support, she needs to physically live in your home. If/when she can stand on her own feet, she can move out. If/when she has a partner who is willing and able to take on her care, she can move in with them. She does not have that now. 

 

IMO you need to set some limits. There have to be times when she is available to you, in the home, where you can help her. If she is not willing to do that, she needs to have supports in place. If your home is not appropriate or desirable, you might need to look into some kind of halfway house, group home, assisted living type of situation. 

Pretty much living at her boyfriend's is her version of a halfway house LOL  

 

I agree with most of what you said, but the problem isn't identifying that she needs to be independent/competent....is is figuring out how much support she needs and where to place it....so she can continue to be be independent. 

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She needs to develop coping skills just like she has for homework and work.

 

Appointments-she writes them down on a calendar as soon as you tell her about them, just like she takes care of her homework.

 

It sounds like she needs physical support, like someone to wake her up when needed so she doesn't miss things, so can someone at her boyfriend's house do that?

 

It also sounds like she needs support for administrative tasks, so she needs to either let you or boyfriend help. And she should immediately write all dates in the planner. She should be handling the rest of her life like she does her homework--write it down and map out a plan and enlist boyfriend's help (maybe they could get in the habit of checking her planner every evening before bed?).

I agree.  The problem lies with the boyfriend isn't always around. She basically lives at his house, so she is there when no one else is.  He has school and work, so he may leave before 8am and not come back till night time.  She will curl up and go to sleep, not waking up for 12+hours.  She is used to sleeping through texts/phone calls so she doesn't notice those until she wakes up and checks her phone.   she will wake up to an alarm...if she remembers to set one. LOL  She doesn't have an internal sense of time anymore so she can't just wake up and say "oh, it's one in the afternoon, I should get up and check my phone."  To her, if she is tired, it must be sleepy time. LOL  She sleeps when it is light out and when it is dark out, that doesn't phase her anymore.  His bedroom window  has heavy wood blinds, and is kind of in an outdoor hallway, so the light doesn't change with the time of day aside from light/dark. 

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Why isn't she waking?  Is she setting an alarm and sleeping through it, or not setting it because she doesn't remember to check when school is the next day?  Or what?

She forgets to set one, or thinks she will be awake during that time of day and over sleeps by hours at a time.   She will plan to sleep 9 to 10 and end up not waking up for 12+ hours. 

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I think you're nearing a point where you need to let them sink or swim. I'd probably sit them both down and brainstorm, with the understanding that you'll be taking a step back. I'd probably also point out that true love does what is best for the beloved (including waking them up when needed) and since she's not really living under your roof anymore you can't hold responsibility for the things that require a physical presence (getting up on time, remembering appointments, etc.). I'd also tell them if she wants help with the college stuff, she needs to schedule a time with you for help.

 

And when they left, I'd probably cry because being a parent is so dadgum hard.

Yep.....but best laid plans still fail.  

 

 

I did step back, and she paid the price.  She can't control her fatigue so making plans around it aren't really possible.  That is why she needs outside support.   She will know she has an appointment and plans to attend.  She can accidentally fall asleep and not wake up for 8-12 hours. (Things like alarms/smoke alarms/dog barking will wake her up so she isn't in danger)  Just like the other day, when I texted called 5 times (once an hour between 10am-2pm).  She went to be at 130am.  Her boyfriend was leaving the house sometime around 12-1pm so she really thought she would wake up when he was awake getting ready for the day.  She didn't and he didn't know we were going to meet up and do college stuff. So he let her sleep. LOL  We needed to be at the college by 3pm and it is about 15 minutes away.. She slept for 13 straight hours even with someone being in the room at the same time and her phone/texting going off on her phone.  LOL   She was completely out of it and woke up about 230, which was too late for her to wake up and go to the college (she can't just wake up, and and go places due to dizziness/fatigue, she needs 30+ minutes to get out of bed if she is actually asleep).

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We just talked about this 2 days ago.  She is going to try to commit to a schedule for 2 weeks and see if that helps.  She goes on a 10 day vacation in mid Sept, so it will be a good reboot point. 

She has asked her employer to cut her work hours to the minimum in the future. She was planning to work more this summer to save money for school, but her fatigue is making things worse not better.  Part of the problem is her boyfriend's schedule is chaotic too. Between work and college (he already started back she has a month still) some days he leaves the house before 8am, sometimes it isn't until 2pm. Sometimes they in bed at 10pm and sometimes it is 2am. She feels the best at night, so she tends to stay up later. 

 

I am going to ask her to consider staying at home for 2 weeks and to try to go back to the way life was when she was last stable (2 years ago).  Getting up in the AM, doing school, a specific diet an weight bearing exercise (she used to be a cheerleader and threw people in the air every afternoon LOL) .  We will have to modify it for her current abilities but to try to schedule the key points in her day to see if that helps.  

 

  

That sounds like a good idea.  If it did then maybe ways to continue it at bf's could be figured out.  Or maybe a plan that has her staying at home on days/nights when the schedule at home works better and at bfs on other days/nights.

 

Having a schedule where she's up when she feels best makes sense--aside from melatonin production type issues.  And maybe they need to have a room where there is outdoor light coming in during day so that internal bio-clocks are not further confused and disturbed.

 

 but the chaos sounds like something that in and of itself would tend to cause illness and not being able to perform well on complex tasks. Certainly in itself enough to make getting up hard, remembering what to do when hard, and would probably significantly add to fatigue. etc.  maybe she could look up things about problems workers who have frequently changing shifts experience to see for herself -- if she is like my teen who tends to think that mom knows nothing

 

 

does bf have chaotic schedule every day or are days consistent as to every Monday similar to every other Monday?  Is he able to achieve more consistency?  Did you say he wants to be a doctor? If so, would he recommend his schedule to patients as a healthy way to live?

 

Incidentally, irregular sleep is also linked to poorer academic performance. So maybe they'd both want to improve that to the extent they can.

 

 

eta:

 

it seems to me that the primary support you can give her is figuring out how to establish

a healthy life pattern

and healthy sleep pattern.  

good "sleep hygiene"

(and/or having her come home to do that, and then gradually move back out as it can be kept intact as a pattern she needs).  

 

More that than phone call and text reminders.  I don't see any call system, planner system, or anything like that can make up for the chaos you are describing, particularly for someone with chronic illness like this.

Does she need to see a sleep specialist doctor or go to a sleep clinic for evaluation?

Possibly spouses of people with irregular job shifts could give ideas on the aspect which involves bf?

Do her doctors know about her sleep chaos?

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I was wondering from the early posts in this thread if EDS and dysautonomia could be the issue.

 

My 19yo is going through this as well, even to the point of having two spectrum sisters who make life very stressful (actually, that's mainly the sister who also has OCD).

 

A went away to college last year and managed to get through the year, but it was super tough to handle things long-distance. A can't go to a local school because of major issues with heat. It just isn't possible for A to walk across a campus in Texas. We can have 90 degree days even in December. A went to Adelphi University last year, but their disability services were not very good.

 

Right now, A is working on getting a student visa to go to Canada for school. It is actually cheaper for A to go out of country than to go out of state. We have a puppy we are training to be a mobility service dog. Currently she is just an ESA (and A is approved to have an ESA in dorms).

 

A has lost a lot of functionality over the past couple of years. It's really hard when you never know whether you're going to have an okay day or a horrific day. A has to very careful to pace out everything that is planned to not end up bedridden. That still happens on a regular basis though.

 

There is an EDS social group you might want to join on the WTM boards if you aren't already on it. It doesn't get a ton of activity, but I always check it when I get on the boards.

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It is just the more general, everyday life she forgets.  She missed 3 chiro appointments in a row, because she either slept through them or forgot I told her/texted her about them. They were on the same time/day of week as they have been for months.  She wanted to go, she just forgot. 

 

What has the plan been for her to get to and from these appointments?  

 

You say that if she is asleep she doesn't respond to texts and phone calls, but she responds to an alarm.  Would a change of a ring tone to an alarm sound help so that you could reach her by phone when she is sleeping when it is necessary?  

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Pretty much living at her boyfriend's is her version of a halfway house LOL  

 

I agree with most of what you said, but the problem isn't identifying that she needs to be independent/competent....is is figuring out how much support she needs and where to place it....so she can continue to be be independent. 

 

Not really though. In a residential facility (and I'm not suggesting that she needs this, or that it's ideal) there would be set wake up times and lights out, set meal times, and she would never be alone. There would always be an attendant available, at a minimum. 

 

Where she is now, it sounds like she is alone a lot, and mostly fending for herself. Which is exhausting, and why she's dropping a lot of balls. 

 

BTW, a wheelchair is not a terrible thing. She would be able to use it when she needs it. It would save her a lot of energy and allow her to do more things which are just too exhausting. I use a wheelchair when i want to get my kids out to something but can't be on my feet. (I also have chronic illness, not just lazy  :laugh: )

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This is a little outside the box, but is there any way to get her an apartment or room to rent or something in your neighborhood? She could figure out a schedule that works for HER with your assistance and the boyfriend's assistance. She might feel better ,even if she needs LOTS of support to have a space that is entirely hers and that she can set her own dependable schedule, not having to work around that of other people.

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I have to admit that it concerns me that she is so dependent on the boyfriend. He's only 19 years old and he has taken on an awful lot of responsibility.

 

Tap, are you at all worried that he might get tired of the responsibility and break up with her? I would hate to see that happen, but it worries me that he might see his college buddies living far more carefree lives and start to want what they have.

 

I wish your dd could move back home, but I know how hard it would be for her to deal with your younger dd all the time.

 

You're in such a tough spot. It's so hard for you to help your dd when she's not in the same house. Is there any way you could convert your garage or basement into an apartment for her, or convert a cute prefab backyard shed into a tiny house so she would be living at home without having your younger dd around her all the time?

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How about getting an objective third (fourth?) party involved?  Some sort of coach-type person who is familiar with your daughter's challenges.  I don't know if such a person exists. But, a person to work with your daughter and her boyfriend to sort things out.  A social worker type person?  

 

I too wonder about this young man.  I mean, I get that they are adults and want to live like adults.  But, it sounds like your daughter just can't right now.   And, while I understand that he loves her and wants to do right by her (not sure if you said it in this thread or a previous one), he simply may not be equipped at this stage of his life to do that.  

 

I think Catwoman's idea is great too.  

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Has she looked into disability? If she qualified she might be able to drop work and just go to school. It might also get her some in home help,maybe an assistant for medical appointments, insurance coverage, etc.

I have no idea how to even begin the process, especially since she is still working. Is that even possible? 

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I have to admit that it concerns me that she is so dependent on the boyfriend. He's only 19 years old and he has taken on an awful lot of responsibility.

 

Tap, are you at all worried that he might get tired of the responsibility and break up with her? I would hate to see that happen, but it worries me that he might see his college buddies living far more carefree lives and start to want what they have.

 

I wish your dd could move back home, but I know how hard it would be for her to deal with your younger dd all the time.

 

You're in such a tough spot. It's so hard for you to help your dd when she's not in the same house. Is there any way you could convert your garage or basement into an apartment for her, or convert a cute prefab backyard shed into a tiny house so she would be living at home without having your younger dd around her all the time?

I am worried about the boyfriend too.  He has a weird family situation so he has stress there.  He has DD18s health issues.  He has his own college to worry about.  He is considering getting his BA in biology and then going into the military to become a doctor. He works seasonally (summer) for his father but is considering getting a winter job. Their current plan is to both get BAs in biology and then get married before he goes into the military.  All I can say, is that he seems to be the one encouraging her to be with him.  He doesn't like me, so they don't really spend much time around here. he will bring her over to pick up her things and quite often, he just sits in the car waiting for her (not coming inside).   I guess it will all just play out and if it is too much, he will have to say so.   

 

Even if I did convert something for her, he wouldn't stay here, so it is a moot point. Wherever one of them goes, the other is not far behind. We really don't have the money or room to make an outdoor space anyways. 

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This is a little outside the box, but is there any way to get her an apartment or room to rent or something in your neighborhood? She could figure out a schedule that works for HER with your assistance and the boyfriend's assistance. She might feel better ,even if she needs LOTS of support to have a space that is entirely hers and that she can set her own dependable schedule, not having to work around that of other people.

Not really. I live in a neighborhood of homes that rent starts at $1200+ a month.  These aren't even big homes, maybe 1200sqft. our house would rent for almost $2000/mth and we have just over 2000sqft in a basic linoleum/formica/carpet home.  We are just in a fairly expensive area. 

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I am worried about the boyfriend too. He has a weird family situation so he has stress there. He has DD18s health issues. He has his own college to worry about. He is considering getting his BA in biology and then going into the military to become a doctor. He works seasonally (summer) for his father but is considering getting a winter job. Their current plan is to both get BAs in biology and then get married before he goes into the military. All I can say, is that he seems to be the one encouraging her to be with him. He doesn't like me, so they don't really spend much time around here. he will bring her over to pick up her things and quite often, he just sits in the car waiting for her (not coming inside). I guess it will all just play out and if it is too much, he will have to say so.

 

Even if I did convert something for her, he wouldn't stay here, so it is a moot point. Wherever one of them goes, the other is not far behind. We really don't have the money or room to make an outdoor space anyways.

If your dd marries him and then he goes into the military, how will she manage on her own if she's living far away from you and he gets deployed for an extended period of time?

 

I think it's pretty rude of him to wait in the car instead of coming in and saying hello to you when your dd is in the house picking things up. I know you've posted before about him taking things you say the wrong way, and I wish your dd would step up to the plate and demand that he start treating you better. I worry that if they get married, he will try to keep driving a wedge between you and your dd.

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If your dd marries him and then he goes into the military, how will she manage on her own if she's living far away from you and he gets deployed for an extended period of time?

 

I think it's pretty rude of him to wait in the car instead of coming in and saying hello to you when your dd is in the house picking things up. I know you've posted before about him taking things you say the wrong way, and I wish your dd would step up to the plate and demand that he start treating you better. I worry that if they get married, he will try to keep driving a wedge between you and your dd.

Yep, I agree it is rude.  I am trying to give him some space and just let it (hopefully) die down.  She finally told me her opinion on the matter (I don't want to post her thoughts on a public board) and while I understand her point of view, it still bugs the crap out of me.  He is finally talking to me again so there is some improvement, but well....there is obviously still an issue if he sits in his car most of the time. Honestly, it is easier for me if he isn't around, because I now have to buffer everything I say to him and walk away second guessing what he is going to read into my words.  

 

I have no idea how she will manage on her own.  Time will tell I guess.  I have so much to worry about currently, I can't even think about the future.  With her illness, she could be in complete remission or she could be bedridden.  No one knows. 

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Yep, I agree it is rude. I am trying to give him some space and just let it (hopefully) die down. She finally told me her opinion on the matter (I don't want to post her thoughts on a public board) and while I understand her point of view, it still bugs the crap out of me. He is finally talking to me again so there is some improvement, but well....there is obviously still an issue if he sits in his car most of the time. Honestly, it is easier for me if he isn't around, because I now have to buffer everything I say to him and walk away second guessing what he is going to read into my words.

 

I have no idea how she will manage on her own. Time will tell I guess. I have so much to worry about currently, I can't even think about the future. With her illness, she could be in complete remission or she could be bedridden. No one knows.

Worrying about the future isn't going to solve anything, anyway, because although you advise your dd, she's going to make her own decisions in the end, so it's probably better if you can try to keep your mind off of it. :grouphug:

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