my mum was diagnosed with autoimmune encephalitis in April . She is still in hospital with it and it really is heartbreaking to see her so poorly and completely not like her usual self . I try to talk to the doctors and nurses on the ward but they can’t really give us much answers .. she’s had different treatments and although she is a lot better than when she was first admitted ( she couldn’t control her body movements , lost the ability to walk and talk , eat and was completely out of it )
i just wanted to know if anybody else’s experiences were similar ? I mean it’s been over 3 months and she is still so agitated and often violent with the staff . She gets really confused and upset and is unable to do the basics still . I keep hoping and praying that she can get better because this disease really is dreadful and before she was poorly she was a healthy , active person with a bubbly fun personality .
I worry constantly that she would be getting better by now ! But because I don’t know anybody else to have ever been diagnosed with encephalitis, I really don’t know what to expect from day to day .
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lw1990
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Hey, I’m really sorry about your mum. My family said it was so traumatizing to watch me go through E.
The origin of my illness is unknown; I’m being monitored for AE. I have/had the things you mentioned (trouble eating, speaking, walking, controlling body). My brain was inflamed for at least three months in and out of hospital.
We all tend to feel a sense of urgency and even impatience when it comes to illness and recovery. But I just want to let you know that we on HU and in ES have been and maybe are still experiencing something similar to your mum (and to you as carer).
I’d say your family’s experience is par for the E course, and truly anything goes for E. Those with E are usually sick for months and months, even after we get out of hospital. Then the recovery (the much harder part, in my opinion) begins and will likely take years and years. Honestly, E is a different monster, and we’ve all needed to dramatically adjust our expectations of illness/recovery arcs and timelines. Your mum will likely get better in most ways eventually, but it will take a very long time, and she might not be exactly who she was before. I don’t know how old you are, or if you have other support, but, if not, please find some (at least feel free to talk to us on here). You can’t do this on your own—and neither can your mum.
This is likely one of the worst things that have happened or will happen to your family. Know you’re not alone, and we all understand. ♥️
Thank you for your reply . It’s good to talk to somebody who has been through the same horrible experiences because at the moment I just feel completely lost , so I can only imagine what it must feel like to be going through it yourself 😞
It really is just horrendous. One day she was fine , and the next she was a totally different person .
What’s really hard is that she knows she is so unwell and often says that she has a terrible disease and she can’t get better from it .. which just breaks my heart because I love her more than anything in this world 😭 it’s the worse watching somebody suffering on the worse possible way and not being able to stop it .
Some days I see a slight improvement and I come away from the hospital feeling positive and then the next day I could go and she has taken 3 steps forward and 10 steps backward ! I don’t know if that is normal but like you say everybody’s experience will be slightly different .
I hope you also make a good recovery . You have to think about how far you have already came and feel proud of yourself that you are going through something absolutely terrible but are so strong and getting through each day .
You’re very welcome. I hope my comments were helpful, and I’m happy to try to answer any specific questions as they come up.
Yes, E is a thief in the night; it steals everything short of one’s life. For close to a year out of hospital, I didn’t understand my own illness and the resulting ABI, and I didn’t know about ES or get to talk to anyone with E. Those early months are so scary and lonely, but I can say, based on my and others’ experiences, it does get better and easier… most likely not “back to the way things were,” but at least a subtle trend of improvement with some little and big dips along the way… so, yes, what you’re witnessing is expected.
Also, yes, I said the same kind of things about myself. I still do. I am still in pain every second of every day and severely limited. Mere existence is a burden. I often talk like, “I am always going to be like this.” It’s not true. I’m not the same as I was a year ago or right out of hospital. Yes, recovery will slow to a snail’s pace, but let’s try to have a long-term perspective and think about recovery in years and months, not days or weeks, and be sure to celebrate the little things ✨
But your mum is off the hook from those thought-revisions at this point. Her brain is still inflamed. Don’t hold her to anything she says right now. Just nod politely, say something generally affirming, and ignore it. She’s not herself. If my family believed every bullshit thing I said over the past two years, they wouldn’t like me very much anymore 😅
I'm so sorry about your Mum. I'm the mother of a 6 year old boy who was hospitalized with AE for 2 months in Sept/Oct. 2021. I second everything kitnkaboodle said. Every case is different, but I can tell you what I've learned about AE, for what it's worth, now that we are 9 months into recovery (which I date from his final hospital discharge), and about a year out since his acute phase of AE. We also worried that our son wasn't progressing fast enough, but now I'm seeing that painfully slow recovery, with lots of setbacks, is normal.
Some thoughts:
--Again, as kitnkaboodle states, you should probably think in terms of years when it comes to recovery, not months. I am basing this on our experiences, and those of other people in the AE community I've been in contact with. Neurologists seem to consistently underplay recovery time, or else give you zero expectations at all.
--If your Mum is still hospitalized, and just coming out of the acute phase, you're at a very early stage still, and her agitated, odd behavior is totally normal. I went through this too with our son. He was totally out of control at the hospital (he bit me and tried to bite the nurses...), and we also had 2-3 months of almost constant daily temper tantrums even after discharge. Ativan became our best friend to get over the rough patches when we simply couldn't calm our son down for hours. However, the behavioral issues slowly, slowly improved, over the months.
--There will be ups and downs. That is normal. Look for an overall upward trend in terms of your Mum's general cognitive ability. Even now my son has bad episodes of a few hours, and even 2-3 day long stretches of bad days when he seems to be more "out of it" and disturbingly nonverbal again--but he comes out of them. Also, when my husband and I step back and look at where he is now, compared to the previous month, or 3 months before that, he's always overall better cognitively, and has regained more skills. (For example, in December of last year he couldn't say one word, or answer questions. By March he was saying words again. Now, in July, he's speaking in 3-word sentences sometimes!)
--I find our son is slowly, slowly returning to the child I knew before AE--or someone recognizable anyway. For months I was in agony because I felt like he was another person. I even asked the neurologist if he was ever "coming back." I felt disconnected from him, like I couldn't get through. He was clearly processing his sensory environment very differently from the way others were, and was angry all the time. But now, 9 months out of the hospital, I'm seeing glimpses of his sense of humor and sweet personality again.
It's possible your mother's recovery will be much speedier than ours (fingers crossed), but slow recovery doesn't mean she's not recovering at all. It seems to be quite common. Unless things go drastically downhill (seizures, hallucinations, weeks of obvious regression), she's likely on the upswing.
All the best to you and your Mum, and feel free to ask more questions!
I am also sorry to hear that your Mum has contracted this strange and horrible illness. Kitnkaboodle and Harper1 did a great job of covering what has happened and what is to be expected.
I'll add a few thoughts, as well, though. No, there are no 2 cases of encephalitis that are exactly the same and people have different rates of recovery. Some improve quicker and more completely, while others seem to take forever to make "baby steps" in recovery.
It seems that in the case of Autoimmune Encephalitis, the initial onset of the illness is more severe and requires a longer hospital stay. However, once your Mum gets out of the hospital, the real process of healing will begin. Yes, it's still too early to expect too much, so expect the erratic/strange/different behaviours she will exhibit. But know that the old saying, "Time heals all wounds" tends to be correct.
My case of "The big E" was supposed to kill me, but it didn't. I was not supposed to be able to ever walk again and was supposed to be transferred to a nursing home for the rest of my life. My hospitalization occured on April 16, 2018. I spent 10 days in the hospital, and for the first 3, I was in a coma. During these days, your Mum's experiences were similar to mine.
I have fought the good fight and my doctors call me their "miracle patient"! And believe me, it has been quite a fight!! This year has been the best one yet for me, in a long time!!
And hopefully it will be the same for your Mum. One bit of advice I will give is to make sure that you take some time for yourself, and have some fun! Laughter is the best medicine and if you can, find ways to laugh, even if it's just watching some funny videos of some old shows.
Afer all, cell phone battery will only last so long, and then it must be recharged. It's pretty much the same for people, too.
Hoping your Mum is well enough to be released from the hospital soon, and that you "recharge your battery" often!!
All the BEST to you and your Mum!
OldGnome
Here's a pic of some of the baby deer that decide to visit me here every year. Hopefully you will get a smile out of them! (Click on the pic to make it full size and see their little spots!)
Hi, I am really sorry to hear about your struggle. I had E in Nov 2020, was hospitalized for 50 days, then inpatient rehab for 42 days. I am still going to outpatient PT,and counseling.
I can say it is an exhausting and incredibly frustrating recovery that my family has and continues to endure. I am a different person now, and am regaining some of my lost skills.
I had to learn how to walk again, from wheelchair to a walker to now a cane. The process is tiring and can include a lot of setbacks. I fell a few times and still struggle with my balance.
What Kit says is true. I can only add that I also dream of the day "my old self" may return. But I know that part of me may never return fully. Accepting that is the hard part. Try to be patient with her. Getting support is the key. A therapist has been helpful for me along with a great few friends.
Thank you so much for all your messages guys . It is so thoughtful of you all and it is also really useful to learn about other peoples journeys so thank you !
I am trying to be as positive as I can be but it’s just incredibly hard and I find it difficult to talk to people about the ‘normal’ day to day things . I just want to stay in bed mostly when I am not at the hospital . I guess it’s just the now knowing that is a huge struggle . With the brain it’s almost impossible to get any straight answers from the doctors and then you are fearing the worse .
I put my trust into the ward staff, but I wonder whether I should be more pushy because we rarely have any contact with them and it’s getting to the point where my mom is mostly bed bound and surely that is not good for her mentally either when she has regained the ability to walk ?
I feel like she would benefit better if she was at home with her family and we could help her the best we can and she could maybe sleep and eat better here . I spoke with my dad about it and he was going to ask today bur surprise surprise nobody is around to talk to 😡
She has been in the same room for nearly 4 months and myself and dad visit for up to 6 hours a day but I just don’t see her improving there .
So glad our stories are helping you. We’re here for you!
If my family hadn’t been pushy and obstinate at the ER (three visits and two ambulances before hospital admission), I’d be dead. But surviving is only half the battle. My family also had to convince the hospital staff to let me go home instead of to in-patient rehab, where they didn’t allow visitors; it was during the first unvaccinated COVID wave.
It’s great you can visit your mum, but, honestly, get her out of there, if possible. I don’t know the details of the situation, but I do know that I made a better early recovery by being home with my loving family, and slowly but surely trying to *live* again, in the very limited ways I could. Again, I don’t know if your mum absolutely needs 24/7 medical care, but if there’s a chance she can go home, try for it. It will be insanely difficult for everyone involved for at least the first few months at home, but it’s better than the alternative.
BTW — doctors rarely talk straight with patients/families, especially when brain injury is involved, because they don’t know much and don’t want to be wrong or held liable.
AND — what you said about struggling in daily life and wanting to stay in bed is expected. Your life is really difficult right now. Feeling down is expected. True clinical depression is when you’re feeling down *without a reason.* You have PLENTY of reasons to feel like this. The best thing we can do is try to be grateful in spite of the suffering (but no need to fake positivity).
I too am so sorry about your mum and also that you are having to go through this. I actually did you a long reply at the same time as I liked OldGnomes photo but E being what it is it appears to have wandered off into the ether. (Obviously I never sent it!). I’m 4 years down the line now. 4th anniversary on 8th August. I can honestly honestly say I’m a different person from that first year afterwards. However I’m also a different person from the me before E. In my case HSVE. None of us E warriors return to our old ‘normal’. I was a busy person too, with a good social life, family etc. Now my life is a lot slower. I can’t do half the things in a day I used to. But what I have gained is an appreciation of everything I can do and enjoy. I can drive, walk (I honestly couldn’t remember how to walk normally when I came out of hospital. That bit took probably a couple of years or more before it felt natural again). See friends, appreciate my garden. Read. And what I can’t do, I’ve learned not to miss (well not too much 😊).
I’m no nurse but it can’t be good for your mum not getting up, only seeing 4 walls. We all needed to push ourselves forward and how can your mum do that at the moment? Good luck. Let us know how you get on please.
Thanks guys . I contacted the ward and arranged a meeting with the doctor next Tuesday at 4pm so I hope he doesn’t let us down .
. I am going to ask him what the next steps are because she has had many treatments now - one again yesterday to suppress her immune system and I don’t think there are any more apart from the continued steroids she will need to take .
I think the reason she can’t be discharged yet is because her behaviour can be so unpredictable and erratic . She has a carer with her all the time when we aren’t visiting just to make sure she doesn’t hurt herself .
Is this also quite normal ?
She sometimes falls over and before she was always trying to jump out of her bed so they put a mattress on the floor instead .
She can remember quite a lot of information which I am really pleased about and can now hold a pen and colour in ( something she definitely couldn’t do 2 months ago )
When I look back on her journey so far. I can see there is improvements because for weeks she just lay in bed with her mouth wide open staring into space unable to walk or talk . It really was so scary .
She attacked the staff and tried to escape a few times leaving the security guides to have to physically restrain her which was terrifying .
They put her on a mixture of drugs which I sometimes fear could be making her worse in some ways . Does anybody else have any experience with this ? It is definitely something I want to ask at the meeting .
You really are all truly inspirational btw . To go through something as horrendous at E and come out the other end fighting and staying so positive is so wonderful to read .
Glad you’ll be meeting with the doc soon! Ask all of your questions—thoroughly and repeatedly, if needed. I write down my questions in advance of appointments, adding to the list as I am reminded of things. My mom did that for me in the beginning, but I manage and remember now.
Yes, in a good chunk of E cases (and even more so in AE), erratic and violent behavior is common. And yes, drugs can sometimes make behaviors worse. I’ve trialed half a dozen drugs, and they either didn’t help or made me crazy—or crazier. (I think doctors are much too flippant in prescribing drugs.)
But, like I said, the progress will be slow and nearly imperceptible at times, but still there. Gentle slope upward with some dips along the way.
Still question everything the doctors and nurses say and do. They don’t actually know everything. They are *practicing* medicine. Most are trustworthy, but a healthy dose of skepticism is necessary, especially as the medical system has been stretched and strained to its breaking point over the past two years. Things might be missed. Patients might be ignored. Questions might not be asked—or answered.
You might not get an answer; I didn’t. But sometimes no answer is the best answer, and that (lack of) information is just as useful in figuring out how to proceed in life. At some point, the next doctor and the next drug won’t be helpful. The tricky part is identifying when that point has arrived.
This all sounds very familiar: you're in an exhausting E stage still, but one that you will pass through! My son also went through a period of time in the hospital when he had to be watched 24/7. He would run manically and clumsily around his room, jumping off furniture, and knocking over equipment. We didn't have a carer, so either my husband or I always had to be in the room to prevent him from hurting himself. It was so bad that I had to time my showers (which were in the bathroom only 2 feet away) for when he was sleeping. I was so dead-tired by weeks of this that I stopped waking up at night to stop him--even though I was in the cot nearby--so the nurses had to zip him into an enclosed bed to thrash about in when he woke up at night.
I'm not sure if your mother had seizures leading up to her hospitalization (also very common with AE), but if she did, it's possible that her anti-seizure drugs are also contributing to her angry and erratic behavior. My son was on the anti-seizure drug Keppra and I was warned that "Keppra rage" is a thing.
I presume your mother was given Rituximab or Tocilizumab to suppress her immune system. My impression is those are the "big guns." We did the following, in order: steroids, plasma exchange, and then Rituximab. For us, it seemed like the only treatment that "worked" was the Rituximab--though even that took 6 to 8 weeks to really make a difference in our son's behavior. I've heard of other people not needing the immunosuppressants if earlier treatments helped. We left the hospital after just under 2 months, after the first Rituximab infusion. Then we came back 2 weeks later and did the second and last Rituximab infusion as outpatients.
This is a real ordeal: both physically and psychologically. I am not sure how involved you are as your mum's carer (hopefully you have other family helpers?), but if you can take little mental breaks for yourself (inasmuch as that is possible...), try to schedule them in--be it two hours at the hair salon, a long walk in the park, etc. It's a marathon and you'll need to conserve your energy to get through. In the early stages, when we had to watch our son 24/7 and his behavior was completely out of control (screaming for hours, running around his room for hours...), there were days when I honestly didn't know what I would do if he continued on that way--I was headed for exhaustion. But know that those days will pass and it will slowly but surely get easier! (In almost all cases.)
As E patients and carers, all of us have particular mental challenges to overcome, as we battle this disease, in addition to the trying physical recovery. It must be bizarre and disturbing for you to be in a situation where the relationships are reversed, and YOU are suddenly the carer for your mother, who's currently in a more child-like state of dependency. Wishing you continued strength going forward. ❤️
Hello lw1990 - I just wanted to say I can really relate to all the things you’ve listed are happening to your Mum. Just over a year ago I was in hospital with encephalitis and over the next (nearly) four months later that I was in hospital I didn’t have the ability to walk, talk or eat (eat took a long time to come back), I did get violent with the staff and I was before all of that very healthy and active. There’s no rhyme or reason for why encephalitis strikes some of us but, what I can say, is that we can all say here: things will get better. After my time in hospital I finally came home and in the year since I’ve had to relearn somethings - my memory for cookery is missing for some reason, general nouns about the house I struggle to remember, I’m a slow eater and tribble a bit if I’m really bending over - but otherwise, I’m all other respects, life has returned. We all experience encephalitis differently although there are some more common outcomes.
Thank you . You should feel proud that you overcame so many obstacles and are such a strong person - everybody is fighting their own battles but encephalitis is a different kettle of fish from what I am seeing and learning.
I had a meeting with one of the doctors and my mom had an assessment today . I was so hoping that it would go well but my dad said that she could hardly stand up so they said it was too unsafe for her to come home yet 😞.
What’s bothering me the most though is that even the doctor agreed that he doesn’t think she will get better in hospital and would be better to go home . She is not sleeping , hardly eating and very agitated because of course you would be if you were stuck in a room all day even if you didn’t have encephalitis!
She’s lost so much weight already and I don’t want her to deteriorate any more .
It’s very frustrating but we all just need to have a lot of patience I guess
I couldn’t stand or walk either. Still have problems with that. My mom spent hours in the hospital doing what the staff wouldn’t: Helping me try to walk again and convincing the doctors to let me go home. I would have been put in a long-term care facility if my family hadn’t been so involved. You and your dad are so loving to your mum! It is so hard right now, but it will get better.
Thank you ! My moms having another assessment on Wednesday and I’m going to be there with her this time so I’m hoping to calm her down before it and have been trying my hardest to get her doing things for herself .
Had a lovely visit with her yesterday . We went outside into the sunshine for 3 hours and she walked a lot ! I was so happy .
Yeah , it seems thy some of the nurses don’t want to know ! If they offer her food and she refuses , they just give up ! I always make sure she is showered and dressed , had her dinner and cleaned her teeth etc ..
Do you get much help with health professionals now that you are home kitnkaboodle ?
lw1990 , you are so welcome! I hope my comments help a bit.
Wow, that is so wonderful you and your mum were able to get outside and even walk! That's incredible! I'll be thinking of and praying for the Wednesday assessment.
Yes, you're right about how the hospital staff gives up easily. I know they are overburdened and burned out, but that's really no excuse when someone's life and well-being are on the line. In hospital, I had a couple of negligent nurses. One nurse thought my dystonia was due to anxiety, so she kept giving me anti-anxiety meds (probably diazepam/valium) and fentanyl until my sister stopped her. I had severe drug withdrawal symptoms for a couple months out of hospital. 😡
I did get "aggressive" PT, OT, and ST out of hospital in addition to a bunch of follow-ups and referrals to specialists. But, I couldn't engage well with OT or ST because I was half-blind and the mental exercises aggravated my symptoms. PT was better, but exercising in an N95 mask was rough. Honestly, I think my family did more to help me recover than any medical professional. Even now, that's true. I'd suggest doing a ton of research about available resources in your area. I JUST found out (nearly two years later) that there is a program for home-care assistance, including paying my family members to care for me in the way I'd receive in a long-term care facility or from a home nurse.
As always, let me/us know if any questions come up!
Take care, and I hope your mum can come home soon!
Thank you kitnkaboodle sorry for the delayed reply . So things have moved quite quickly over the last week . My mums Occupational therapist is bringing her home on Thursday for an assessment in her home. She will stay for two hours and then if she’s satisfied , she will leave her at home … I’ve been trying hard to look for home support ie community rehab because here in the UK there seems to be very little support available that the hospital are telling us about .
I’m worried sick because she is still very agitated and the OT told me that she may be brain damaged .
Does anybody else have a similar experience ?
They can’t seem to tell us for sure or anything , just that she is making some progress but her behaviour can still be very erratic at times and she struggles to remember how to do the simple things.
I will keep trying to find support but otherwise it seems we are very much alone in this.
Anyway, I just want to say how grateful I am for all your messages of support . It feels like a very lonely place when nobody else understands .
That's great news! I hope she can stay home. Word to the wise: More problems show up when someone with E comes home (make sure the OT takes that into account). It's a stressful transition for everyone, so I hope you all can be positive and patient. Things WILL get better.
That's a dumb thing for the OT to say. Of course your mum has a (probably severe) brain injury. That's expected in most E cases. That doesn't mean what the OT likely means. It sounds like the OT said that to explain away your mum's difficult behavior (in a very insensitive and ableist way). Brain injury from E is extensive and pervasive; it affects EVERY SINGLE part of one's body and mind and behavior. It will be months and years before your mum's brain stabilizes and heals, at least partly or mostly. Most E patients get better in various ways eventually, but many of us have long-term or lifelong difficulties. It will be a couple years before your mum's situation becomes clear.
I was a nightmare for my family the first year out of hospital; there were times they didn't even know what to do with me. Eventually, my brain inflammation went down, I started to heal, and, most importantly, I acknowledged and accepted what happened to me. I eventually realized I didn't need to know or understand what happened before accepting this new life.
Yes, it is a lonely place. Yes, almost no one (not even many medical professionals) understands. I am glad you feel supported by us online. We, of all people, understand.
Very difficult for you and your family @lw1990 - I can only imagine how difficult - but I think you’re right, it’s a waiting game now. I can see a lot of similarities in what you’re saying - probably not that that helps you much right now but I’m sure things will get better.
Can I just thank you all again for your replies .. I’ve had a really bad day today and reading all your replies has given me some hope again which I really needed .
So my mum came out of the hospital on Thursday . The OT did say it was unusual given my mums mental state but agreed that staying in hospital any longer was not beneficial for her after she’s had all the treatments on offer .
It was such an emotional day. Seeing her being wheeled through the door a totally different person from when she left 4 months ago . She was agitated for most of the day but slept so well in the night which I was so happy about . I spent all day yesterday worrying about her as I was at work and my dad is now her full time carer.
Today I spent all day with her and it’s been exhausting to say the least !
We took her for a walk she is familiar with ( which she used to really enjoy ) but she was very agitated and wanted to go home .
When we got home she just couldn’t relax all day and kept shouting . I know this is probably to be expected and after reading your posts I understand how hard it is at first coming home , but I also hoped she would feel more at ease being home .
She isn’t able to do anything for herself at the mo. We are caring for her and this isn’t the issue because we would always do that for her but the constant shouting and distress is the hardest part .
I worry about my dad too .. I fear that he won’t be able to cope because it is all consuming and basically 24/7 . I will help out as much as I can and he knows this but I have also got to think about my work and my own house and family .. it is so difficult and I feel that I am nearing a nervous breakdown .
Hey, lw1990 , glad to hear your update and that our past responses have provided some comfort today. As you probably have realized, there will be many bad days in this E journey. At first, there will be more bad days than good days, but, slowly and eventually, the good will outweigh the bad. Hope endures.
I didn't—and don't—feel comfortable with even the most familiar things. I can barely tolerate being in a car for any reason. Anything, even a short walk somewhere familiar, is so taxing for a person with E. It is great news that she can sleep a lot; E usually causes sleep problems. Honestly, let her sleep or lay quietly in a dark room as much as possible. I slept 20 hours a day for a while out of hospital. A simple, stable, boring routine with lots of rest is best.
When my brain was still inflamed, I was triggered by the littlest things. I would get overwhelmed by something trivial and then rage for hours or days. It took me so long to come down from any kind of stress or emotional event or daily activity. My siblings had (have) to talk me off of metaphorical cliffs regularly. (Harper1 also had some great insight about AE aggression above.)
And then drugs made (make) it worse. I got hooked on sleeping pills a few months out of hospital (trazodone; "mild," they said... "not addictive," they said). Bullshit. When someone's brain and body are that injured and imbalanced, anything that "takes the edge off" or "relieves some pain" or "helps with sleep" is preying on a vulnerable, weak mind and body. I had to take 10mg of diazepam (valium) a few days ago to get through my fifth brain MRI; I couldn't let my involuntary movements mess up the scans. That shit stayed in my body and made me catatonic for two days afterward. And then I wanted more... It felt nice not to spaz or react.
I'll stop ranting, but I just wanted to point out that (a) this transition home is going to suck, and (b) doctors will probably hear that it's not going well at first and will offer drugs that might make it worse later. Be patient and careful. **BUT** there is always a time and place for useful tools, as Harper shared regarding Ativan. It can be a temporary aid.
Also, maybe you could look into home-care assistance or church charity or even college student volunteers? If your mum only trusts you and your dad to help her directly, the volunteers could do other house stuff instead to make things easier for you two. I don't know if that's an option. Just an idea.
You and your dad might also like to join a virtual or in-person ES support group at some point. There's one specifically for family members and carers. Next on August 17. encephalitis.info/blog/virt...
Sorry for the novella. I hope some bits are helpful to you. Feel free to dismiss the rest.
Unfortunately, my mum was home for 1 week and my dad made the very difficult decision of taking her back to the hospital because she was unable to relax and screaming at night etc 😢 I really , really didn’t want her to go back but I could also see that me and my dad just couldn’t manage long term without the proper help she so desperately needed .
It’s been one month since she went back into hospital and they are finding her a bed at a neuropsychiatric rehabilitation hospital , however so far a couple have turned her away and said she is not suitable ( probably due to her violent behaviour during the acute stage )
Honestly , it really is just horrible to see the one person you love the most suffer like this and not know what to do for the best . She is making progress but I can’t go against my dad either and don’t want to make the wrong decision .
It’s great that your husband is now back home with you and making progress . I believe that time is the only healer , particularly with this illness . From what I have been hearing and researching , it can be a very long and slow recovery but gradually it gets better and easier . I just hope this will be the case with my mom too .. I can’t bear to think of the alternative .
You take care of yourself too and make sure you are getting plenty of time for you as well . Life can throw some pretty awful things in our way but we have to learn to take each day as it comes and try and smile / laugh as often as we can .
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Help with rehab at home after acute phase of autoimmune encephalitis for my 16 year old
Autoimmune encephalitis by unknown antibody.Has anyone in this community ever had this diagnosis? 
Encephalitis 
Encephalitis Newbie - Seizures and Sports 
