I see my wife making progress daily, especially since she's been on Risperdal since this past Monday, yet she still has the agitation, poor short-memory, hallucinations/delusions. She can now bath herself, speak clearer (although what she says are about things that are about something/one else), feed herself and clothe herself.
I guess I just want to know when you guys saw your loved one come back. I know someone mentioned when they came home they didn't feel anything, yet at some point a person with E realizes they have been "out of it" because of the illness, and I just want to know what to look for.
Does a loved one wake up one day and ask something like "what happened", or is it something else.
I ask because my wife comes home from rehab this Wednesday because the only deficiency she has is cognitive (delirium/confusion), and I just want to know what others dealt with so I can prepare myself.
A bit of a long list, so thanks in advance
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When do you know loved one is "back", wife coming home Wednesday
- By Anarchy_X
- Posted November 7, 2009 at 3:33 pm · 14 replies
- In Life after encephalitis
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14 replies
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- By MichelleN
- Posted November 7, 2009 at 4:54 pm
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My mom said that I slowly started to realize the way the world really was after I learned things like how to dress myself. From what little I remember it's like one day I just started having a memory.
I'm glad your wife is doing well enough to go home.
Michelle
- By Anarchy_X
- Posted November 7, 2009 at 6:23 pm
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Michelle, how many weeks after you were home did this happen? And were you also on Risperdal and Seroquel at the time?
- By MichelleN
- Posted November 7, 2009 at 6:58 pm
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I'll see if my mom knows because I don't remember much from then & I certainly don't know what meds I was on.
I'm not sure my mom can give a good estimate of time it took me to get to where I could remember things because time was hard for her to remember things.
The first memory I have is my mom coming to check on me to tell me to take a shower. I told I'd done that hours ago & she just laughed. I don't know why she laughed, but I do remember she laughed.
Michelle
- By SickOfBeingSick
- Posted November 8, 2009 at 4:41 am
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Well, I'm not a caretaker, I was the patient. But I can tell you It's been more of a journey than a destination for me. Even now, more than a year later, I'm still gaining cognitive abilities back and realizing just how "out of it" I was. Sometimes it's quite a shock to realize how "out of it" I've been.
I was extremely frustrated at first! Nothing would work the way it was supposed to. My legs, my hands, my balance, my emotions, my thinking, my memory, my language, my reading ability . . . extremely frustrating! I wish someone had been around for me, to help me out and to simplify things and break them down into manageable bits. I couldn't even figure out how to ask for help, or sometimes even figure out exactly what the problem was.
I couldn't watch an adult movie or read an adult book, I couldn't follow the plot. Simple was best. I started watching TV shows that didn't take much concentration to follow. Shows that I hated before! Like "Scrubs". I started reading children's books. I have to keep tasks short and simple and break things down into the smallest components or steps of the overall task.
Ativan helps me the most for agitation, but everyone is different. The more tired I am, the more agitated I get. The more my head hurts, the more agitated I get. It's hard for me to remember when I'm in that state to take an ativan and lie down in a dark, quiet room, which is what I need. Agitation is still a huge problem for me.
Not sure that really answers your question, but that's what I remember.
Cathy
- By Thazooma
- Posted November 8, 2009 at 10:13 am
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Hi...I'm a caretaker. This E is so hard on everyone. I have said that before. I have learned so much through this site. I have come here every single morning since 6/19/09, the day my husband was released from the hospital.
The most important thing I have learned is that there is no set time or degree of recovery.
Every single one of these survivors have been/is going through hell and if they are/were lucky enough to have a caretaker, their caretaker goes through hell with them, just a different kind.
As a caretaker I was/am desperate for answers too, which surprisingly the doctors can't seem to give you. Keep reading these post. I for one have learned so much from these survivors and caregivers.
My morning chant in my head: Patience...don't lose it, use it. Compassion....he needs it. Understanding...he needs it. Remember (as if you could forget) he was a functioning adult before E hit him, he is still an adult but having to learn all over again, treat him as an adult but use patience.
Just keep reading this forum!
My prayers for everyone going through this E or any other medical situation that has changed their lives forever.
- By petersencm
- Posted November 8, 2009 at 11:34 am
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I could talk forever. I was a patient almost 19 years ago.
My husband was so patient. Thankfully I was fine physically. No real uncomforts with my body to deal with. I was really tired at first. I had to have someone around me 24/7 for quite a few weeks after I was home. I had a 4 year old and a 7 month old at the time and so that's the main reason.
I only really cared about myself when I got home. I knew I had a lot to work on as far as getting back to life. Be patient with her. Go run in your room when you need to let some emotion out - away from her.
Every person is different. Plead with God for His help everyday before you step out of bed. He sure helped us all as I slowly got back to life. Things noticeable progressed day-in and day-out. I liked how the lady before me worded it 'treat her as an adult but use patience.' perfect. Everyone did that with me and I know it made it go much smoother than it could have.
- Marianne -
- By misseaster13
- Posted November 8, 2009 at 12:02 pm
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like Thazooma i too am a caregiver for my husband,he was diagnosed in april this year,what Thazooma wrote is perfectly true,time and extreme patience is the key,that is very hard at times i think of it now as agift sent to me to help us both.
- By one_lil_red_hen
- Posted November 8, 2009 at 3:20 pm
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Glad to hear your wife is coming home.
Sorry not to have any answers about when to expect your wife to become aware that she's been terribly ill.
But I can say, it's important not to push too hard. Ask closed ended questions, like... would you like breakfast? Not, would you like this or that for breakfast? The simpler your question, the easier it will be on both of you.
You advance as she advances. Patience is key... PATIENCE! patience!
It's important to understand, that no two survivors have recovery the same way. What happened for one person is no guarantee for another!
Just expect that recovery will take lots of time. Just think of it in months... expect that by two years you're going to have a pretty good idea what residuals will remain with very slow improvements after that time.
REST~ It's important for her to rest. Schedule small tasks with small breaks following. As her cognitive abilities improve, longer times of mental activity followed by breaks.
It's important to realize that her brain has been damaged, it's not so much that the brain is in the process of returning to normal, it's in the process of relearning normal or how to cope.
It's true that the electrical connections that are used to move information around the brain and store it have been damaged. It's not that they will heal, but that the brain will learn workarounds to accomplish tasks the same tasks as before E and that takes time... And that time is different for everyone.
So keep patience, don't set high expectations that will result in frustration and disappointment for you and wife. Take it a step at a time, a day at a time.
Glad she's well enough to come home! Keep us posted!
~hen
- By petersencm
- Posted November 9, 2009 at 11:18 am
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One thing I was told in the hospital I, 19 years later, never forget. They said it's not like I totally forgot every thing and there for have to RE learn it all, but that it's still
in there. It just needs to be pulled out. Something, once pulled out, are out for good and you will remember it forever no problem. YIPPY :-)
(I still have that go on now. Some names, once remembered, are there for good.)
but other things, you "OH - that's right ! I remember now!" but then go back in the, we'll call it the hole, as soon as you stop thinking about it. It's there but you just have to work on pulling it out again.
Hope that made a little sense. I was so glad when I heard it put that way.
- By cbrocket
- Posted November 9, 2009 at 3:54 pm
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I've felt like I was here all along. My hubby made the comment " I feel like I have my wife back" about six months after coming home from the hospital. We are all different. I really like hen's advice. about breakfast. Options are very confusing. I often wikll walk around and around the car because stopping and opening the door for some reason is confusing. My hubby is very keyed into me and can get me on track real fast, 'Stop ' is a good command for me. Bless you and your wife
rocket
- By Netgirl
- Posted November 10, 2009 at 7:10 pm
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You wife, has a long way to go. Be Patient. She will not just come "back" just like that. It takes years. The first two years are the worst, my neuro called it the "fog". You are in a foggy state of mind during the first two years, and things won't always make sense to your wife. I remember that my sister labeled the cabinets with post-its, like, "dishes", "cups", Forks, etc...and a friend of my Jacqueline, told me to put up a message board, where, the keys would be, and reminder notes and a calendar which is marked off so I knew what day it was. it just takes time, Good luck! Jo
- By wendymac
- Posted November 11, 2009 at 9:47 am
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My husband had E back in february of this year. I will not lie...it is not easy when they get home. On the outside they appear fine so it is tough to remember that they are still recovering. I can't explain from his perspective how frustrating it was but I think it is almost as difficult as a spouse to deal with E. It has been 9 months and he is starting be happy again. The key as the spouse is to realize not to take things they say personally. It is very hard to try and help and be "snapped at". I was hoping one day he would wake up and be his normal self but I think instead he has realized that this is the way he is now. It is a very long process and this site helped me realize that. I shared alot of posts with him but edited alot out so that I did not scare him. Because no dr can tell you a timeframe for improvement that can be a bit scary. It does get better...
- By tinydancer
- Posted November 12, 2009 at 12:09 pm
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I feel your pain. My bf was in the hospital last February with a bad case of enceph. In the beginning, I was feeling like he'd be better after a couple months.. HOPING that would be the case. As the months passed, and my expectations were not met.. I realized I had to accept the current situation. We started to see real improvements after about 4-6 (can't remember) months.. and then they slowed down but are still improving. This could very well be a lifetime thing. Use the tools you find here to cope, and be careful to take time and care of YOURSELF. She needs you. I learned this kind of the hard way and started to resent my bf for getting sick as I got so wore out. .. so be kind to yourself and have patience.
- By udi45
- Posted November 13, 2009 at 9:06 am
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The one thing that I have learned from this is put MY expectations away...Trust me...that is the hardest thing to do when you are in a relationship for a long time...We are into the 10th month...he has come so far...Some days are harder for me...But I find myself his wife now not his caregiver and I am so grateful to be able to say that....
So I guess what I can say to you today....no matter how hard it can get...love, kindess & faith have gotten me to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference....
Judy
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