What's wrong with my sister's arm? Is it related to her schizophrenia? (Potential self harm? - she is completely non-communicative, usually immobile so this would be huge) Could also use advice on her near catatonic state?
19F 5'4" 98 lbs (weight is her weight before schizophrenia, she hasn't been weighed since but I put this for the automod, I'd guess her as quite a bit heavier now) dx: schizophrenia, non-verbal/non-communicative (doesn't speak or use ASL), immobile. **no** diagnosed physical conditions including no skin conditions. Meds: Seroquel, Effexor. Eta: She's supposed to start lovenox next week. Effexor: 262.5 mg a day. Seroquel: 300 mg a day. No other medications except a daily multivitamin (one a day women's petites, if that matters, in my head the smaller size is easier for her to swallow but maybe I'm delusional).
Hi. My 19 year old younger sister had no mental (or physical issues) throughout childhood and teenage years until being diagnosed with schizophrenia at 18. The symptoms that manifested first at 18 were social withdrawal and isolation. She stopped seeing her friends and while she lived in the family home, she started spending 90% of time in her room. She would only speak if spoken to. Her mood and personality changed quickly and abruptly. She was a social butterfly prior, extremely talkative, bubbly, and cheery. We, nor the psych team that initially saw her, knows what caused the changes in her and set into motion the onset of her schizophrenia and we were told sometimes it "just happens". No family history, no substance use, etc...
Anyway, things progressed into her having auditory hallucinations, shortly after that she started having visual hallucinations. She also started having signs off paranoia, believing that people were trying to kidnap her and brainwash her (particularly the government), so she put foil up on her windows. She was having erratic jerky movements. And started saying incomprehensible made up words. She also expressed that she was suicidal and had a specific plan to end her life. My parents thought she was possessed (they're religious) and they started praying with her. At this time she was still verbal and responsive, but would never leave the house.
I told my parents I was taking my sister to a church service but took her to urgent care at the hospital. They sent us to the ER. Because she had a suicide plan, they 5150'd her. She was diagnosed with schizophrenia and started on seroquel and effexor. When I went home and told my parents what I did, they kicked me out onto the streets. My sister was allowed visitors, I visited, but my parents didn't. I stayed with friends for a while, couch surfing. The hospital described my sister as a complex case and she ended up staying in the psychiatric ward for a couple of months. She was starting to do really well in her last few weeks in the psychiatric ward, became more like her pre-schizophrenic self. Her funny, sweet, and talkative self. I was saving money for my own place but didn't have enough yet, so when she left the hospital she was back at my parent's place (my friends couldn't accommodate her). I wasn't allowed to see her and they took away her cell phone and computer so she could only talk to my parents. My parents don't believe in medical intervention because they live by faith and God's healing. So they did not allow her to continue the medication and she was forced to stop them abruptly/didn't wean off of them.
I called them often to ask about her and as time went on they told me she was doing worse, her symptoms were back with a vengeance. Still believing her to be possessed (alleging her tattoos opened her up to possession) they had an exorcism performed on her. I won't talk about that in details because it's irrelevant and I don't want to open that can of worms. I wasn't present and I tried to stop it but couldn't. My parents stopped updating me on her, wouldn't answer my calls. I was able to get an apartment a couple of weeks later, and I went to my parents house and physically took my sister despite their opposition. At this point, she was completely non-verbal, non-communicative, and immobile; according to my parents she'd been that way for only a couple days but I have no way of knowing. She was soiled and dehydrated. I changed and cleaned her and I took her back to the hospital for psychiatric help and they coaxed her to talk but she wouldn't. They gave her IV fluids. And she saw what I believe to be: a crisis team, social worker, and a psychiatrist. She did not speak or write anything down on the piece of paper. She was essentially catatonic but they decided she didn't need emergency care, which I really, really, really don't understand. They told me to take her to a pcp and ask for a psychiatric referral. So, I got her in with my pcp (family doctor). She turned 19.
She saw my pcp and became her patient, and we are waiting to get in with an outpatient psychiatrist she can see long-term after our pcp sent out the referral (she did this right away on the first visit). This was a whole process and really difficult because she was basically catatonic and so it was impossible to know what schizophrenic symptoms she was experiencing. I tried to become my sister's medical power of attorney but was told I couldn't easily become hers because my sister wouldn't/couldn't sign off on that. Pcp did try contacting my parents (I don't know if she went against HIPAA to do this? Since my sister was 19? Or if this was proper next of kin protocol? I didn't question it, in case she was doing it under the table kind of thing as a favour to us) but in any case: they refused to help in any capacity. I had to go through a court process for conservatorship. I petitioned the court for a temporary conservatorship and got it. During this court process she was hospitalized again. (Not here for legal advice, just medical please). I worked with their patient advocate and an attorney. They kept her for 21 days in which they put her back on Effexor and Seroquel, then they released her back into my care. Which I also really don't understand. Why wouldn't they keep her in a psychiatric ward when there was NO progress to her near catatonic state???? I simultaneously filed the permanent petition when I did the temporary one, I was interviewed by a court investigator, and I'm waiting for the court hearing now.
My long term significant other has been paying for everything: our housing needs, legal bills, her medical bills, etc... I work very part time hours to try to help (only 1-2 hours at a time at a close friend's family business because I try not to leave my sister alone. I dropped out of full time college to take care of her but I've been taking some online classes. I don't have much work experience so haven't been able to find a proper wfh job.)
But here's how my sister's "basically" catatonic state is - I keep saying basically/essentially because she isn't FULLY catatonic I guess - she chews and swallows: she doesn't talk at all or have any facial expressions, doesn't write anything down if given a paper and pencil, never holds/grasps anything in her hands, she's immobile and has no reaction to her environment (she can't/won't(?) walk on her own, I have to move her around which I do by "fireman carrying" her - yes I literally even did then when she was discharged from the hospital to get her to my car, and the staff saw no problem with that??? They didn't think hey, wait, maybe we should keep this patient hospitalized??) My boyfriend and I have tried to "human crutch" (two-person assisted walk) but she will not walk/move her legs.
She uses an adult diaper, I clean and change her, I bathe her (on my own, boyfriend of course doesn't assist with this), and I feed her.
To feed her I have to place a small cold spoon on her bottom lip and I gently stroke the outside of her lip with my fingertip (hospital showed me how to do this), this gets her to open her mouth (not sure if that counts as a form of mobility?), when I put food in her mouth she will chew and swallow (also not sure if this counts as mobility?).
She drinks water from a syringe (without a needle)... This is what the hospital told me to do: sit her fully upright, fill the syringe with lukewarm water, tap the syringe to remove air bubbles, slide tip of syringe into side of her mouth, point towards her inner cheek, administer by slowly pushing plunger pause and allow her to swallow after each squirt. I keep the syringe thoroughly clean.
Our pcp doesn't normally do virtual since covid but makes an exception for her and has refilled her psychiatric medications (only had to refill once since she was discharged from the hospital - they discharged her with an rx). To give her the medications I use the feeding method, pcp says it's okay that she dry swallows them.
I will move her from her bed, to the couch with the tv on, or to a chair (inside) facing the glass balcony doors so she can see outside. I don't know if there's actually any point in this? I don't know if her brain is even processing anything?
I am not a caregiver or psw. I have no experience in this. I feel I have no help (besides my boyfriend). I don't know what to do at this point. The local hospital has been no help and as you can probably imagine taking her anywhere is difficult but I'm willing to do anything or go anywhere to help my sister. Would it be worth it to take her to a different hospital or will every hospital dismiss her or accept her as a patient but only very temporarily before releasing her back to my care? If I have to take care of my sister like this for the rest of my life I will but I can't help but think somewhere, somehow she could get a higher level of care? I love her so much but I think she should be in a hospital permanently? Is that even a thing? I'm only a little older than my sister, I just don't think I'm qualified to help her. I don't understand why they didn't keep her? Or put her in some kind of long term home? I asked my pcp about it and she just told me it doesn't work that way, so how does it work?
Today I came home from work and noticed my sister's arm is like this? Some kind of rash or something? Or to me: it kind of looks like scratch marks? So I'm wondering if it's possible that she did it to herself? I'm actually hoping that is the case because that would mean she is actually feeling something and can actually move her limbs, even if it's a feeling of anger or something, something is better than nothing if that makes sense... Because she normally doesn't express feeling anything at all and normally doesn't move at all. She doesn't even look at you if you say her name so this would be so huge. I booked an appointment with our pcp for her to be seen Thursday but I thought maybe I could get an answer here before that? Since being back home, she hasn't scratched her arm or moved. (Her tattoos were done **before** this mental health crisis). I have absolutely never, ever ever ever scratched her or hurt her in any way.
ETA: I replied to comments here
Eta 2: It completely slipped my mind but: My pcp is putting her on lovenox specifically because of how immobile my sister is. Not going to lie, I am squeamish about needles, like I got a tetanus vaccine as recommended by my pcp and I literally threw up at the sight of the needle. So this will be a tough one, but of course I'll do it for my sister, even if I puke every time. I know the risk is her getting a dvt and it's important. My pcp wants to show me how to administer it into my sister's abdomen, so the plan was for me to have the rx filled and to take it to my sister's next appointment (we scheduled an in-person one that lands next Tuesday a few days ago, but I bumped that up to this Thursday). However, my boyfriend and I are planning to take my sister to a hospital or academic learning center in a large city before that as per recommendations here.
ETA 3: Just an update: we've gone through our normal evening/night routine since I posted this and she's in bed sleeping now.
Made her dinner (homemade puree of peeled, washed and steamed sweet potato; cooked lentils that I thoroughly washed and soaked overnight before cooking (I also changed the water from the soaking water); cooked chicken, cubed and steamed with the sweet potato, temperature checked to safe standards with a thermometer, and some uncooked fresh green peas that I shelled and washed thoroughly). Everything I cook her is organic (I don't eat organic myself because it isn't feasible financially so there is non-organic food cooked in the house on shared equipment).
She eats three meals a day. Breakfast is always oatmeal blended with baby formula as per pcp recommendation and sometimes I blend it with cooked eggs. Lunch is usually pureed steamed fruit and vegetables. Dinner is usually pureed steamed sweet potato, cooked peas/beans, and a cooked meat if I can budget it. I make these in a baby blender (Baby Brezza).
She drinks 64 fluid ounces a day safely and carefully given by a 2 ounce needless syringe (sold as 60ml so technically over 2 ounces). Never squirted directly toward the back of her throat, but rather against her cheek. I rotate cheeks every session just in case it's some sort of negative pressure on them. Water is the only fluid I give her.
She always eats and drinks sitting upright.
I do put some minimal spices in her food so it tastes as good it can for what it is (I don't know if can even consider the taste of things anymore but whatever); she hated spicy food and it turned her red so never anything spicy like chili pepper🌶️ spice or anything that could be the culprit for the redness. Spices were just a little bit of garlic salt and dried oregano today. But sometimes I put thyme, parsley, dill, or onion powder.
Then I did some assisted ROM exercises for her: arm lifts and knee-to-chest.
Then we sat on the couch and I put on some music she used to like, not sure if her brain can register it so she can appreciate if still but I do if anyway. I cut and filed her nails (fingers, and toes [cause who knows]) extra short in case she is scratching herself. I painted them too (OPI - Infinite Shine: Beach Party Teal Dawn).
I gave her a bath. I went out and picked up some bath products that may help whatever is going on with her skin. I used Aveeno Fragrance-Free Skin Relief Body Wash with Triple Oat Complex, CeraVe shampoo and conditioner (separate products that I used separately, not 2 in 1), Aveeno Daily Moisturizing Body Lotion (With prebiotic oat, paraben free, fragrance free), The Honest Company Fragrance-Free Conditioning Hair Detangler (bought this previously). Used a MainBasics shower loofah. Brushed her hair out with just a regular old Wet brush. Her hair is down to her waist and very thick (she liked it long) so I always blow dry it (a really old Revlon hair dryer, not sure which model). Sometimes I curl it but didn't today (really old Remington one, don't know model).
I sometimes do her makeup but not often (when I do it's all Covergirl products: Trublend foundation, eye enhancers shadow palette in natural, lash blast mascara, continuous color lipstick in rose quar). Covergirl was her favorite. I don't leave the makeup on long. Just dress her up in the nicest dresses I can afford, then do her makeup, take a few photos of her (I don't post them anywhere or send to any friends or family since I don't have her consent), then remove the makeup and put her in comfier clothes. She wears 100% organic fabric clothes - I bought a few everyday outfits for her from Quince but I splurged for a couple of pricier dresses from Pact for when I dress her up especially nicely. I change her clothes to daytime clothes during the day and pajamas at night. Our pcp said I could just put her in hospital gowns 24/7 but emotionally I cannot do that. Like food, I do not wear organic clothes because of financial reasons, so non-organic clothes are also present in the home environment.
Her diapers are Depend brand, I always use the Night Defense ones (in medium) even during the day because it has the maximum absorbency. The package says 12 hrs protection and my pcp said with her fluid intake her urine outtake could cover 24 hours even but I'd never let her sit in a soaked diaper all day and night; I don't want her to get an infection or rash. I change her 4 times a day (despite the ludicrous cost of adult diapers). Her bowel movements are once a day, usually between dinner and bed time. I check her diaper often for feces.
Anyway, then I brushed her teeth (RiseWell Mineral Toothpaste), Beautiful Mind Biodegradable Floss Sticks with Strong Bamboo Charcoal Thread & Vegan Cornstarch Handle).
Then I put her to bed (Naturepedic bed - serenade organic hybrid mattress, Naturepedic organic latex pillow, Naturepedic organic mattress protector, Naturepedic Adagio mattress topper, Avocado branded sheets and pillow case. Avocado branded pajamas - Modal line tee & and pant in colors in Rosewater or Navy, Navy tonight). And I read her a few pages from one of her favorite books until she fell asleep, just a fun fantasy series - nothing that would scare her or something. Again, I don't know if she is even aware I'm reading but that's okay.
Obviously not affiliated with any of these brands. Just gave all and every specific detail in case one of you is like, "Oh hey, xyz brand/product can cause rashes or medical issues! That's the culprit!" or "You shouldn't be doing that specific exercise you're making her worse!" or "Feeding her that is making her ill!" or whatever else. I keep careful record of everything every day in a diary/journal: food and water intake, exercises done, etc...
She has not scratched or moved herself since I made this post. Even when I left the buy the bath products. When I came back the lip gloss had not smeared (someone recommended I put a colorful lip gloss on her finger tips to see if it smudges or ends up on her arm). My boyfriend and I are up coming up with a plan right now to get her to a hospital or academic medical center as per recommendations here.
Please don't comment saying the things I do for her like curling her hair or doing her makeup and nails or dressing her up is stupid or a waste of time because she's essentially catatonic. My sister was the ultimate girly girl. She loved those things so much. She was totally that girl in high school who would wake up an hour early every single day just to do her hair and makeup. She can't do those things now, so I do them for her. If she's aware and cognizant of what's going on then great, if she isn't then.. That's okay, it makes me happy to do it for her.
To answer some of the common questions being messaged to me:
Has she been tested for PANDAS? Does she have any medical history? Vaccination history and medicine history?
- She has not been tested for PANDAS but I looked up what it is and will 100% ask about it when we get her help in the morning. She does have very little medical history as an infant. Just edited to add this in case it matters but her infant history was unremarkable, just some maternal health details, birth details: as in delivery details and newborn stats (birth weight, length, head circumference), my parents declined tests like newborn screening tests by signing an official waiver. They weren't against seeing doctors at that time but were antivaxx + anti med already. They did not do any newborn checkups. Within a couple months of her birth my parents joined a different place of worship and became radical then nothing else regarding medical history except she kind of has.. some "medical history" and I'm an idiot for not disclosing that but we were just seen by a medical student and not a literal licensed doctor so she doesn't have any formal, confirmed medical history after birth and I didn't think to talk about it because it isn't her current health status. When she was 8 she fell ill. My friend's older sister was in medical school and she came over to evaluate my sister because my parents wouldn't take her to a doctor (she evaluated her without my parents knowledge). I was present the entire time she was being evaluated. She had a headache, sore throat, and red rash on her chest and stomach. This rash ended up later spreading to neck as well. She had a white tongue when evaluated then it was red later on.
My friend's sister thought it was some type of strep and recommended we go to a doctor for antibiotics but we we were really young and did not have any healthcare coverage and barely money. I'm sure we would have qualified because we were a low income household but my parents not believing in science or medicine never tried to enroll us in anything. I got sick with whatever she had within a couple days, same symptoms plus vomiting. Whatever it was cleared up on its own in about a week or so. I had a little bit of money from handwashing dishes at a really dodgy local inn. Naturally it was under the table (they paid me $2 an hour) and I didn't have nearly enough for us to see a doctor and get medication. Parents also got sick but no rash. We all recovered fine... Or so I thought before this PANDAS thing. I did not mention this or include that rash as a skin condition in my original post because we fully recovered from that; I thought I was only supposed to mention current diagnoses and she's not had any rash since then until now.
Maybe irrelevant but we also had chicken pox as kids (also "diagnosed" by the same med student - so I don't know how reliable or accurate that diagnosis was). Again we didn't see a licensed doctor. That also cleared up within a week or so though.
She presumably broke a finger as a kid (presumably because again no doctor, and no med student this time) and my parents just taped her finger to the next one. I think it healed fine?
As a kid she would get what we guessed to be motion sickness when we were driving. She'd get dizzy, and had noticeably rapid breathing and she'd throw up every time we drove anywhere. By teenage years this was resolved on its own.
We were "home schooled" (we basically taught ourselves using the curriculum that was supposed to be taught to us lol because our "teacher" was for all intents and purposes useless and we had a bit of a "class" because my parent's religious friends also "home schooled" their kids). None of us (to my knowledge, still in contact with most of my "classmates") received any childhood vaccines because our parents are antivaxx. She has no other notable "medical history" - just some unremarkable infancy stuff. I'm actively working to getting myself vaccinated and I got my sister vaccinated for the following (this was done on a catch-up schedule as per pcp: tetanus, diphtheria, pertussis (only one I have so far, I focused on my sister); measles, mumps, rubella; hepatitis B; Polio.
She's never taken any medication, even historically (to my knowledge), outside of the NaCl fluids (if that counts), Effexor, Seroquel, and the multivitamin (if that counts). She never received medication to help with the motion sickness, and we were both never administered things like Tylenol because of my parents religious beliefs.
- Do you take your sister on outings? Does she have a any resemblance of a social life anymore?
Pcp recommended I avoid doing this unless necessary (like going to see her), so no. I do take her out onto the balcony for some fresh air and sunlight during the afternoon but generally I don't take her anywhere. She dropped all of her friends when she became reclusive because she thought they were spying on her for the government. So I don't let any of them visit her in case my sister is cognizant underneath and still has that fear of the spy thing. I do chat with her previously very close friends via text once in a while. We are 100% no contact with my parents and our extended family at this point. I don't generally let anyone except my boyfriend into the apartment but we've had two water damage specialists/contractors working on some restoration and repair. I intentionally hired women for this because I knew I'd have to work some of the time they would be at the apartment. No disrespect intended toward men, I am not some extreme misandrist or something, it's just that I felt more comfortable with that dynamic. I do not even let my boyfriend be alone with her, because as much as you trust someone: it's my opinion that realistically you never know what someone is capable of. I have my best friend stay at the apartment when the specialists/contractors are there to keep an eye on things, but she hasn't noticed anything off during that time.
- Did your sister have a romantic life? Boyfriends? Potential stds? Any SA type of trauma?
I'm not going to go into many details on this because I'm already receiving disgusting messages. She is a virgin, she had a high school boyfriend for 3 months who she only kissed (yes, I'm sure about this). ETA: we didn't attend a physical high school, I meant high school years in terms of homeschool curriculum where we had our homeschooled peers including her then-boyfriend. No SA history that I know of. So, I don't think she has any stds.
- Did your sister experience physical abuse, childhood or domestic via a partner?
Yes, we both received "physical discipline" as kids but it was to an extent that I now believe it to be abuse. I remember an instance where my sister got hit with a cast iron skillet, and another where she was hit with a ruler until it literally broke. We were good, polite kids but we subjected to things of that nature any time we made any mistakes. No domestic abuse via a partner that I am aware of.
- What religion are your parents (Catholic or Christian? What denomination?) What happened during the exorcism?
Not disclosing their specific religion or their particular denomination. Also not disclosing exact or graphic details of the exorcism but will say their "method" is primarily to make the "host's" body as agonizing and inhospitable as possible to the "demons". They also try to break the "will" of the "demons" possessing the "host". The former is done physically. The latter is done through deprivation.
Thanks again everyone. It's really appreciated.