Thank you all for your info! I have sent a couple of PMs out
We have done DBT training and it is helpful. I t will take a while to integrate into daily life I think.
Residential programs sound intriguing and I would love more info on how to learn about them. And @HImom, I am sorry to hear about the chronic fatigue. I always associate that Dx with a person in their 30s or 40s! So your D is living independently, but not able to work? I don’t mean this the way it sounds (and people ask me this ALL the time) but what does your D do all day? People don’t understand when I say some days it is all my D can do to get out of bed. But other days, when the depression is away, she keeps herself busy with chores, artwork, napping etc. It seems like she has adjusted her stamina or metabolism to keep a much slower pace than a typical person. Which worries me if she does start to look for a job or more schooling.
It depends on her stamina. When she’s able, she goes grocery shopping, cooks, cleans, and touches base with friends and family. When she’s feeling awful, she mostly lies in bed and waits for things to improve, emailing her medical providers for any treatment suggestions. It is not the life we envisioned, but we are relieved that the Internet and phones help her remain more socially engaged.
Folks do hire her for a short “gig” assignment and may pay her $100 or so/day or so if she’s able to help them with their movies via editing or other skills she has. It’s not much, but it is something and allows her to feel and be useful when she is able. She is very bright and talented and LOOKS great.
I consider it a win when she feels good enough to join us for a meal or two a day. The stamina issue is like chronic mono on and off–for years. It really wears on her and makes it tough to make ANY plans.
She does have some understanding friends. We are grateful for that. Both my kids have had CFS since they were pre-teens. D was about 10 and S was 12, but S had some symptoms as a preschooler at 3 and 4 years old! It’s a brutal, poorly understood condition that doesn’t get much sympathy nor understanding.
Interesting notes about DBT/borderline personality disorder (BPD)… Before the advent of DBT, BPD was considered something that we didn’t relly have any effective treatments for. Now, BPD is considered something that we can treat with a fairly high success rate (although access to “true” full model DBT is still an issue, especially in rural areas).
Marsha Linehan, who invented DBT, “came out” a few years ago as having had BPD as a young adult, including multiple suicide attempts and at least one long-term hospitalization. Her experiences apparently influenced the development of DBT, which is very much considered a landmark treatment in psychology in terms of how effective it is, especially for a condition that has historically been seen as incredibly hard to treat. It also rocked the field a bit, honestly, as many psychologists were suddenly forced to confront their own prejudices about people with BPD, which were/are often… very unfavorable, with their extremely high levels of respect for Linehan and her work. The great, thorough NYT article on it is here: http://www.nytimes.com/2011/06/23/health/23lives.html?pagewanted=all&_r=0
I wanted to mention that today I set up a 529 ABLE account for my son. Here is the link that was helpful: http://www.savingforcollege.com/529-able-accounts/ It says “savingforcollege.com,” but this page is specifically for ABLE accounts. The Florida account requires that you’re a Florida resident, but at least some of the other states don’t have a residency requirement. I went with Tennessee because it was an easy sign-up. It took less than 10 minutes to fill out the application.
Funds in this account won’t count as “assets” for SS purposes. The limit is $100,000. Not really enough for a lifetime, but better than the $2,000 allowed by Social Security!
Congrats, ML!
Yeah, it may have only taken 10 minutes to set up but ALOT more time researching over the last year or two I bet.
I opened our daughters ABLE acct last June in Ohio’s plan even though we are in NJ.
That’s because it was the only one opening Accts for out of staters at that time…
Who knows WHEN my NJ state will catch up?
Yeah, I talked to my state representative in Maine, and he said they’re still trying to figure out all the details. Geez, they have 180 legislators for a low-population state, and they can’t get their act together enough to get this going? It’s sad.
Even my financial advisor and accountant don’t know anything about it. I wish there had been a campaign to get the word out about this opportunity.
Thanks for these updates! I just opened an ABLE acct for my son. Michigan signed the law in October 2015 and the accounts just became available November 2016. They were not good about getting the word out to anyone.
I haven’t been able to read all posts in the thread yet but wanted to introduce myself and seek advice. My 23 yo daughter has always had issues with anxiety but seemed to function well with medication. She graduated last year and is living at home and working a retail job. She took the GRE and was planning to apply to grad school next year.
Yesterday afternoon she was brought by ambulance to the ER after suffering a psychotic episode at work. She thought her phone was giving her headaches and other paranoid delusions. Previously she had mentioned being stalked on social media, but I didn’t have reason to believe at the time she was imagining things.
I sat with her for 8 hours in the ER until they could locate a facility for a 72 hour hold. She could not understand why she was there and asked me why I was speaking in “codes”. We will be able to visit her tonight but I have no idea what to expect going forward after she is released. Will I need to quit my job to stay with her 24 hrs a day? We can survive on DH salary so this would be possible. What do I tell friends and family? Is it best just to tell everyone at once, or keep things vague and refer only to health issues?
I haven’t slept in 24 hours so apologize if I am rambling, but I know CC has the smartest most helpful people on the internet so am posting here first. We are in CA with a large bureaucratic HMO to navigate. They have no residential psyche facility so she is in a contracted facility now. Look forward to any voices of experience =((
@momsquad, I would love to talk with you by phone if you’d like. I think I can help. My son suffered similar symptoms as an 18-year-old freshman studying biomedical engineering at UT-Austin in 2010. It was very scary. After six years, he’s pretty stable and happy. He’s living in an apartment with 24/7 staff upstairs. He lives independently - goes to the grocery store, pharmacy, library, etc. The staff keeps his meds and gives him three days worth at a time. He takes his meds faithfully. He has a case manager who takes him to a food pantry once a month. He’s on Social Security so we don’t have to spend money on his apartment rent, food, etc. My main responsibility is to drive him to his psychiatrist every few weeks.
But I won’t lie - it was tough for awhile. I was basically his full-time caregiver for almost four years. I found NAMI (National Alliance on Mental Illness) to be an excellent resource. They offer a free, 12-week class called “Family to Family.” It’s like a college class - you get information on mental illness like causes, meds, etc. You also learn problem solving strategies, communication skills, and self-care ideas.
There are many more people in your shoes than you could imagine. I speak for NAMI Maine quite often and even spoke at the annual conference of NAMI Texas last October. You can find a lot of support once you start looking for it.
Family and friends have been about 90% understanding. A couple of people made thoughtless remarks that stung, but most people seem to get it.
HUGS!!
@momsquad, so sorry you, your D and family are going through this. Sounds like @MaineLonghorn will be an excellent resource for you.
Our kids have had long term physical health problems since they were pre-teens. They’re now in mid-late 20s. Fortunately, I was able to work part-time and choose the days and hours worked so I could be around for them, while still supplementing family income. Support for them has been a bit uneven–their HS was very unsupportive but D had amazing friends who remain supportive to this day. Some extended family members “get it” more than others.
Good luck as you navigate this. Please feel free to vent and share here. We care and many have tread parallel paths.
Navigating my mom into a memory care facility several years ago gave me some valuable experience to cope with this situation. I learned to never express anger to caregivers, they are doing the best they can and are terribly overworked. With lots of phone calls and gentle persistence I was finally able to get the information I need to visit my daughter tonight. Medical privacy laws prevented them from even confirming she was a resident of the facility. I called a social worker at our hospital and she miraculously persuaded an administrator from the facility to call me and give me a ‘code number’ that will allow us into the facility. I hope we find some glimmer of the daughter we knew tonight, it’s the most shocking kind of loss when your child becomes a different person virtually overnight. MaineLonghorn has described it all so eloquently and with such fortitude; she is a true role model.
Just popping in to say that we finally have a disability hearing date for my son. It will be March 28th. We applied for the first time 3-4 years ago, were denied, appealed, were denied again, hired a lawyer that will only get paid if we win, and have waited almost two years for the court date since we started this final appeal.
My son is 18 and graduated HS last year. He is taking some community college classes and living at home. He won’t be able to handle the work for a standard AA degree, he is going for an AAS. It gives him something productive to be doing. He struggles with 12 semester hours, so I discouraged him from taking the 15 he wanted to this year. I think he needs the 12 to add structure to his days, if he had less he would probably blow off the work.
My stomach is a ball of nerves about this, we have a lot of time and work invested. I don’t know what will happen if he is denied.
@bajamm, I wish you the very best. It is so tough when our kids are unable to be independent and in limbo because they don’t have an officially recognized “status.” I had to deal with months of trying to get D classified as a disabled dependent so she could remain on our family medical insurance plan past age 26. It was agonizingly painful, but such a relief when it was finally granted.
@momsquad, I don’t have any advice, just virtual hugs. It sounds very scary. You seem to be coping well in such a scary situation.
And to think that last week my biggest concern was that my Instant Pot recipes weren’t working. We’ve seen our daughter during 2 evening visits so far. She still doesn’t understand why she is hospitalized but seems comfortable in the facility. She will be able to come home tomorrow so we’ll finally have a chance to gauge the extent of her illness and determine whether we can leave her alone for any length of time.
Once we have a plan of action for her treatment I will review all of the posts regarding disability designations and special needs trusts. My husband has a defined pension plan so I am wondering if we should list our daughter for survivor benefits, I seem to recall that was one option.
Thank you for the {{}} CF!
@momsquad , has your daughter had a full physical examination? If not, I think it would be useful, to help figure out the cause of the psychotic episode.
@momsquad,
Hang in there. It is a though time but I agree with those who point out that there are more than one cause of an acute psychotic episode. I am guessing you are alluding to the fact that she has Kaiser insurance. They offer a variety of differing levels of care, and if your daughter is appropriate for intensive outpatient or partial hospitalization, they should have the resources for continued care. Take one step at a time.
Gather info, and write notes. I would keep a master log/time line (so on lined paper, for each day of anything, write a short note like date, type of service, what kind of testing). Can have separate notes for detail (I would write a note after doc or therapist important details of what was said and anything specific.) That way, you can ‘coordinate’ info and care to a certain extent.
I now have a 7 page time line for my illness (stage III cancer) - so I have enough detail. I also have copies of important testing. Info is more accurate when they ask questions.
When DD was young and had speech articulation, speech morphology, and auditory processing issues, and the school did a battery of testing (at my request, with input from a friend who is a psychometrist PhD) I kept good notes and medical file.
I agree with good notes and a medical file. When you’re going to an important appointment and they allow you to record, it can be handy to record and transcribe later if it’s too much and you’re afraid you may miss important details. We did this when our kids were having genetic testing and they were going over the results with us (most of it flew over my head). Keeping good notes in a looseleaf notebook so you can add things is crucial so you can add in related tests to go with the MD reports, etc. and keep things chronological or thematic, whichever makes more sense.
Best of luck, @momsquad and all who are dealing with kids with challenges.