What helped either you or your loved one the most while you/they were in the hospital?

[Kjean32]

Is there anything that helped your loved one while they were still in the hospital to increase their memory, do photos help, bringing in items from their home? My aunt is mostly non verbal at this point ( 4 words spoken the last two days) and I know there is still a long way to go in her hospital stay but I want to do everything I can now to help her feel less scared/confused). Thank you.

[Paula-38]

I honestly don't know because I was 1 at the time.

However I believe that photos are useful for memory problems but I can't empathize I'm afraid.

[Kjean32 in reply to Paula-38]

I’m so sorry you had to go through that and that your family had to go through it. Watching their baby go through that had to be terrible. I really appreciate your response, so thank you very much!

[Paula-38 in reply to Kjean32]

Thank you so much for understanding and being so empathetic Kjean32 . I don't come across many people like that. Much appreciated.

[Kjean32 in reply to Paula-38]

I'm so sorry to hear that! More empathy is needed in this world.

[Sophia92]

Hey I had encephalitis when I was 14 and I know it effected my short term memory because I don’t remember much. However when I started to come back around I did remember I had an occupational therapist or some sort of support just helping me to do the activities that I used to love and talk about the things that I love like (Greece) because I’m half Greek. I remember she used to cook my favourite dish with me and that’s one of the first things I remember. Cooking might not help your aunt but bring things for her that she really loves or is familiar with. Hope that helps. It might not work at first I think mine was a long process but keep trying

[Kjean32 in reply to Sophia92]

Hello Sophia92 thank you so much for your advice! I really appreciate any experience as it is helping me to better navigate this, also I am so sorry you had to experience encephalitis. I hope you made a wonderful recovery!

[so_rogers]

Hi, so sorry to hear about your aunt.

My friends and family tell me that I was most responsive when they would show me photos and tell a story to go with it. They would also read from my favourite books and my friends (probably not so impressive to the rest of the ward!) used to sing me my favourite songs.

I think her favourite things would definitely help - they can provide comfort even if it can’t be verbalised.

Best wishes for her recovery & to your family

[Kjean32 in reply to so_rogers]

so_rogers-Thank you so much for your advice and well wishes for my aunt and my family I have been sending pictures along with some books for my dad to show her and read to her, so I am glad to hear that this helped you in your experience. Thank you again. I also hope that you have made a good recovery and that your family got the support they needed.

Best wishes to you and your loved ones as well.

[Archer6]

I was in the hospital for two months with Encephalitis 2 years ago at the age of 58. I don't remember much from that time except for being tremendously scared and confused. I didn't know what had happened to me or where I was. I couldn't remember much. I had trouble communicating. Everything was so difficult. Give her reassurance that she is ok, safe, everyone is ok, etc. Even now, reassurance still helps when I am confused and unsure about things. Pictures help along with a description of who is in the photo. When I couldn't remember, it felt like I was failing a test every time someone showed me a photo and asked me about people in it. Instead say something like "here's a picture of your brother, Steve" or whatever.

Try to keep as positive as you can. Speak to your loved one calmly and positively, things will get better, they are improving. It helped me so much to hear that again and again. It still means a lot to hear it today. From what I've read, encephalitis can take a long time to recover from. It is not like a broken arm or something that is back in shape in 6 weeks. Progress may take time, that's ok.

When I was recovering in the hospital they gave me an iPad with some brain training apps that measure my progress in memory, processing speed, etc. It is helpful to have something that I can tap on and use on my own. I can make 1000 mistakes on it but that is fine, I can see some objective improvement myself and no one sees my errors.

I hope this helps. Remember, your aunt will get better. Tell yourself that and tell her too.

[Kjean32 in reply to Archer6]

Archer6- Thank you so much for your advice and all of your good suggestions. I hadn't even thought about an I pad, my dad did mention that she has been very fidgety so thank you this was such a helpful suggestion in so many ways! This site honestly feels like a godsend to know that others have gone through this and to be able to ask them questions and get such incredible advice has helped me to feel more control in a very powerless situation. You are right recovery will be long but I really appreciate you explaining in a detailed way what helped you. My aunt is 63 and does seem very scared and confused, as she is still not able to really talk. Thank you for providing me with your perspective as it will help me and my family help her the best way we can. I hope you have lots of love and support! Wishing you the best in your continued recovery!

[Kjean32 in reply to Archer6]

Did you recognize anyone while you were in the hospital? My aunt doesn't seem to recognize my dad ( her brother) at all. I'm also curious about the abilities you had while in the hospital ( could you eat on your own, talk, walk)? I know you don't remember much from that time as you mentioned but did your loved one's tell you at all what you were able to do? Because my aunt isn't showing as good of improvement as the doctors and nurses are hoping for.

[Archer6 in reply to Kjean32]

I don’t remember much from being in the hospital but I’ve pieced together some information from others along with a few scraps of memories. When I was first in the hospital, I was mostly unaware of where I was and who was there. I didn’t know I was in a hospital, whether I was awake or dreaming, and sometimes thought I must be in hell. Apparently people would visit and I would not remember their names even though their faces looked familiar. That hurt them and it hurt me too. I wanted to remember everything but the names just didn’t pop into my mind. It felt like I failed a test every time I had to say “I don’t know” and saw the disappointment on their face. That made me just not want to try to answer at all.

After I got the tight treatment I started to come back to reality. I remember telling my doctor that I felt I had been far away and he replied “Yes! You WERE far away!” It helped to have acknowledgement of what I had been feeling. Part of my recovery in the hospital was re-learning to walk. I had to use a walker at first, then later I could sort of walk with my wife tightly holding some straps around me so I wouldn’t lose my balance. It was a struggle to feed myself and use a fork or a spoon. Even a straw was a challenge at first. I don’t remember much of the daily struggles but after the drugs started working I rapidly improved and was able to walk then run and use my hands properly.

Worse than the physical problems was the mental part. I was anxious and not just scared, but *terrified*! I didn’t know what was going on or how I got there. Continual reassurance helped me immensely. My wife would tell me that everything is ok and that I’m making progress. I was constantly worried that I would fall asleep and wake up In yet another different reality.

Progress takes time, but it will happen. Stay positive for your aunt and for yourself too.

Hope this helps.

[Kjean32 in reply to Archer6]

Thank you very much for all of this information. Yes it is very helpful! Trying to remain hopeful, thank you for your response!

[Tuesando]

It is very likely that your aunt will not remember her time in hospital afterwards and she may even have difficulties remembering day to day so I think you should focus on being present and holding her hand. Show her your presence so she does not feel alone. My partner who is recovering at present was very happy that I had taken pictures of him in hospital. It may sound brutal but it helps in the process afterwards accepting how bad things were and understanding the recovery. It helps to show her the journey she is now on.

[Kjean32 in reply to Tuesando]

Tuesando- Thank you for your advice! I am hearing that from multiple people that they didn't remember their time in the hospital so your thoughts about documenting their time in the hospital makes sense. I understand the logic behind capturing the time in the hospital as a way to show how far the person has come in their recovery. Thank you for your honesty on this topic! I wish you and you partner the best during this difficult time, and hope your partner has a good recovery!

[Ocean96]

Hi Kjean32!

I'm really sorry to hear your Aunt is unwell and you as a family are going through such a difficult time.

In my experience I generally don't remember much of my time spent in hospital. However, my family did say they did certain things to help me stay calm as I was also very anxious during the acute phase of my illness.

Some of the helpful things my family did were;

1. Bring in photos and placed them in front of me or beside my bed so I could see them!

2. Bring in some of my favourite things e.g, favourite jumper, make up bag, meaningful items such as a bracelet.

3. My family had a notepad/sticky notes where they wrote 'buzz words' to help remind me of things. Such as the name of my best friends, boyfriend and where I worked. This helped me to stay calm when confused.

4. My family also wrote down briefly a series of 'buzz words' of the lead up to me getting sick as I would forget why I was in hospital and need to be reminded what had happened.

Keeping the environment around me nice and clean helped me to focus on all of these things that my family did to try and help me!

Wishing your Aunt and your family all the best and a speedy recovery!

All the best

[Kjean32 in reply to Ocean96]

Ocean96- First just let me say I am very sorry to hear that you had to experience this horrible illness! Thank you for all your advice, I really appreciate what you said about buzzwords, I will be mentioning this to my dad. I also really appreciate the perspective you can give me as I am not the one experiencing it but I want to help my aunt in the best way I can , so thank you again for your unique perspective! I wish you and your loved ones well!

[jmeg24]

When my mom was in the hospital I brought in photos and hung them in front of her bed. I also played her favorite music and that was actually one of the first things she commented on. My mom didn’t talk for days, but eventually she came back to us. Good luck to your aunt! Hope she recovers soon!