I got a call from my son that they want to transport him immediately to a local psych hospital, one that DS has been in three times. I do not want him at that place. The hospital he is at right now is MUCH better. He is getting more attention in the ER from psychiatrists than he did at the psych hospital. I would rather he sit in the ER all weekend then be moved. I have talked to a social worker and a doctor in the last 30 minutes. They pushed back, and I pushed back more! The doctor asked if I could lodge formal complaints against the other hospital, so I will. I told him I know I should have complained in the past, but after long hospitalizations, I’m just exhausted and don’t have the energy to do anything. I’m complaining now!
They have canceled the order to transport him for now and lo and behold, they may be able to find room for him in the current hospital! Wow, it’s amazing what you can do when you speak up.
I also just called his case manager, and she agrees with me. She doesn’t think the other hospital is good for DS.
@MaineLonghorn good going!!! It’s hard on us to always be pushing, but in the end it helps our kids. Glad you got what was best for him for the weekend and hopefully longer.
Thank you. Tonight, I talked to my son’s regular doctor. He said he has had major issues with the hospital they wanted to take my son to. I am going to start making major waves. I know people are usually too exhausted to complain. I’m tired, too, but this is ridiculous. This has been going on since the early '90s, according to parents I’ve spoken to.
No improvement today; actually, he’s a little worse. Still no beds available in the hospital he’s in. He likes the ER fine, at least. The nurses are great. I will be talking to a doctor in the morning about ECT sessions. They want to get him started on the treatments, but the machines are all booked up.
@MaineLonghorn, congrats on preventing your son’s transfer.
It really shouldn’t be this hard for patients to get what they need.
I’ve admired you here as you’ve shared your son’s story.
@musicmom, thanks. It’s amazing what you can do when it’s for your kid! I am not that kind of person, generally.
Off to the hospital. I hope to speak to the ECT physician. All they could tell me was that she will be by sometime between 8:30 and 11:00 am. I was supposed to go to church because I have duties, but I had to get a sub.
@MaineLonghorn is he still in and out of a catatonic state? Are they doing a lot of medical tests to rule out causes for the catatonia, or assuming it is related to schizophrenia? Is he still on antipsychotics? I was just reading, as you problably have, that antipsychotics can contribute to catatonia and that benzodiazepines, preferably injected rapid-acting, can bring someone out of it. Also NMDA receptor anatgonists (which include ketamine, dextromethorphan, tramadol and methadone).I see that ECT is used but studies are needed. Is that what the doctors recommend? I also saw that Topamax is sometimes used (that is also used for temporal lobe seizures).
I have some experience as an observer of catatonia in my years working at a homeless shelter. So I have always been interested in it. I don’t mean to be intrusive with my info above. I was just looking up any connection to other neuro issues!
The doctor had my son go for an MRI this afternoon. His regular doctor feels like there’s almost zero chance anything will show up, but at the least this will reassure my son.
Today, he was out most of the time until 3 pm, and then alert for about three hours. He shared that he’s miserable all the time (outside the hospital). I texted his regular doctor, who said we’ll work on that. I am so thankful for this doctor who responds to me!! My son must be his most challenging patient, but he hangs in there with us.
Are they still giving him antipsychotics and have they tried benzodiazepines or some of the other options? Agree the MRI probably won’t show anything. Interesting that they were able to skip a CT Scan first. This is quite a puzzle. Good luck. ps are his eyes open when he is “out”?
Yes, they’ve been giving him lorazepam four times a day. It works for awhile and then wears off. He’s still on risperidone. I think it’s too risky to take him off that.
His eyes are open when he’s “out.” Sometimes he can hear what’s being said and sometimes he can’t.
Ugh I can’t believe he’s going through this again. He’s such a sweet guy. ?
Well some info online suggests that antipsychotics can cause catatonia and need to be stopped. And some info says an antipsychotic like risperdone can be used to treat catatonia!! Hoping you have a good psychiatrist who knows the recent consensus on this.
Glad they are doing lorazepam.
Catatonia and temporal lobe epilepsy have extreme disassociation in common but doesn’t sound like he has a seizure disorder.
I hope your son can stay on risperdone and that the lorazepam helps. (We are going through a med change and know how hard that can be.)
Tough, after all you have gone through, to be dealing with a crisis that is entirely new in nature. Or has he had catatonia before?
@MaineLonghorn, just checking in. Really dont want to be intrusive. If you’d rather be quiet, I get it.
Hope that things are going in the right direction for your son.
It must be exhausting in many ways to navigate the inpatient situation. Our DD has not required intensive medical intervention and yet I’m still often overwhelmed and tired. Wishing you and your son the best.
Today was the scheduled annual house inspection by the county as part of the process to recertify our DDs housing voucher.
Someone needed to be available to meet the inspector at her rental between 9am and 4pm.
And it cant be our cognitively disabled DD for safety reasons.
Great way to waste a day for a 5 minute walk through. We are grateful the voucher makes it possible for her to live more independently. Just wish the govt run offices could be a little more flexible. Hope springs eternal.
My late 20 something kid with bipolar 1 (well-treated)and severe ADHD, learning challenges etc. just moved in with me three weeks ago, in the midst of a med change. She has not lived with me since 2015. In the interim, i had sold my house, downsized, gotten rid of most of my stuff, and was living alone in a small apartment, which my kid is now squeezed into. Housing costs around here are so high that my kid cannot possibly make enough to pay for housing alone or with one roommate, and having more roommates was too much stimulation and drama. Sharing with your mom at that age is not ideal (for either of us). Her work pays $13/hour. She is slowly finishing college, one class at a time, and is now a senior. This economy makes it impossible for a young person like this to make it financially. Is anyone else dealing with this? I want her to be settled but that is a long way away. I am thinking maybe I should look into some low income housing for her.
Hi Compmom,
We’ve been in touch before. I don’t have much to offer except commiseration. Your current living situation sounds challenging. We’re in somewhat of a similar situation. My 23 year old D with schizophrenia and ADHD has been living at home after living away with roommates while attempting to finish up her junior year of college. Though her roommates were really great people and wonderful friends, it was way too much stimulation, not to mention expensive. She has been trying to slowly get through college part-time as she only has about 6 classes to go, and did not have a successful fall semester so now we’re re-evaluating whether she will be able to finish her degree at all. She can do the work, she just can’t be in class, so we’re thinking that finishing her degree online may be the solution, still making decisions about that.
In addition to applying for SSI and Medicaid she also wants to live independently, which we are on board with, so we have to explore options there as well. We certainly can’t afford to pay her rent in addition to ours, so we are also looking at some type of low income or supportive housing. In NYS it seems that we have to “kick her out” first in order to get her housing and I just can’t do that, I don’t have it in me. I hope I am wrong though and just misinterpreting things. If she has another hospital stay, we can tell them she can’t come home and then they’ll have to look for housing for her as she cannot be in a shelter environment, but that’s not a good solution either as she’s trying to stay out of the hospital. She can’t really even hold a job that’s more than a few hours a day, she can do programming work at home but hasn’t had much luck finding work like that, I don’t think she knows how to seek it out and I certainly can’t help her with that.
Ugh. I did the NAMI family to family class but I feel like I need to do it again since I thought I had all of this information in hand, but the more I know, the more I know I don’t know. Navigating the system is exhausting and a full time job.
Hugs, @morkatmom. The way my son got into supportive housing was declaring during a hospital stay that he absolutely would not move home with us again (it was just so odd since we’ve always gotten along great before and since!). The doctors and social workers took him seriously and got him moved to the top of the list in our community for housing. That was in 2015 and things have gone fairly smoothly since then.
Yes, I took the F2F class and am now teaching it for the fourth time. I learn something new every time! I think taking it twice is actually a good idea.
I visited my son in the hospital again yesterday. He was alert for a few minutes and then went blank. While I was there, his friend with schizophrenia came to see him (with the young man’s mother). The friend was a little distressed to see DS non-responsive, so he didn’t stay long. Then one of DS’s support aides came but DS remained out of it the whole time. I stayed a total of about an hour and a half and then left. I’m not going to sit there for hours and talk to myself!
Not long after I left, DS called to say he was alert and added, “Too bad you couldn’t stay long.” Uh, I was there for awhile! I find myself getting irritated, which I know isn’t fair. I’m just tired, I think. I asked DH if he could go up today, because I need a break.
My dad was admitted to a regular room in the hospital yesterday, but transferred to ICU overnight when his oxygen levels fell. My middle son stayed with him all night and is now sleeping in his room. The caregiving supervisor told Son he could go home, but he said he would feel bad if anything happened and wants to stay for now.
Thanks @morkatmom I just took the plunge and rented a larger apartment, still small but not ridiculous. This means my daughter and I have committed to a year for stability and so she can maybe, just maybe, finish school.
Like you, I cannot afford to pay her rent and mine (I owned a house for 30 years but sold it in a divorce) and even though this is pricier than my current small place, it is a decent price for the two of us. Best I can do.
Interesting that your D also finds roommates too stimulating. I am no longer sure there really WAS drama just that it FELT like it to her.
Our situations are nearly identical. I strongly recommend online classes. My D is taking one in person this semester but usually takes online. The way they work at her school is two semesters per term for online classes, so she gets two done but only takes one at a time.
@MaineLonghorn I know from the caregivers forum that you are dealing with a lot there and with your son.
At the large shelter where I worked for many years, one of the guests was a guy around 30 with catatonia. He just sat in a corner and stared. For years. It didn’t seem as if he was aware of anything around him. One day he suddenly came out of it. He knew my name! He looked right at me and told me that I “had a thousand sons.” Very poetic reference to the care I tried to convey to the 1,000 guests at that shelter each night. The next day, he went back under. I’ve never forgotten it. Such a generous thing.
I went to two NAMI meetings last summer and didn’ find them helpful at all. Maybe I should try a different group. I read books.
I guard my privacy and that of my kids so I kind of violated that by posting here but I appreciate the company.
@compmom, just chiming in to say that I agree with @MaineLonghorn re: Family to Family NAMI class. It was very useful and informative for me, even though I was pretty well versed in mental health issues after many years of helping family members. In contrast, the support groups were not as helpful for me. I did do I FTF twice, and the other participants influenced my satisfaction with the FTF class (basically, the more similar their children’s ages/situations were to mine, the more helpful to me).
Hugs and best wishes to all families coping with these issues.
@HImom, I see that you mentioned your child being qualified to stay on your husband’s insurance indefinitely after being determined to be medically dependent. I was not aware of this possibility. Are you aware of whether this is a possibility for mental health diagnoses as well as physical or intellectual disabilities? Could you point me toward any starting point for research (the search terms I’m trying are so common that I keep getting the MDCP program, which does not involve keeping a child on the parent’s health plan)? Thanks in advance!!
Then one of DS’s support aides came but DS remained out of it the whole time. I stayed a total of about an hour and a half and then left. I’m not going to sit there for hours and talk to myself!