No short term memory at all

Living without even 1 minute short term memory for 5 months and little expectation that is will get better; does anyone have ideas or suggestions for my brother with anti-NMDAR or me (and family/friends)?

[alpappy]

Hi I it should improve but mine is now in cycles When I get a cold or flu it goes then comes back No two cases will be the same I expect

[Hidden in reply to alpappy]

The recent MRI showed that his brain is damaged (hippocampus scar tissue) on both sides, as seen in patients with dementia (that he does not have). The doctors give us not much hope, I read that “between the lines” ….

[NebraskaTexas]

I'm sorry to hear about your brother. My husband came down with Anti NMDA Encephalitis last August 2020. As his caregiver I was not prepared regarding his memory issues. I thought he would come back home with his normal memory. He has lost 10 to 20 years of his memory. He could not find anything in the kitchen that he designed. He lost his cooking skills. He lost his sense of direction. He has a hard time recognizing faces but can recognize voices. The encephalitis has effected his eye sight and hearing.

Because he keeps asking the same questions about his past and family members. I have started to make short video takes (2 to 5 minutes) regarding his questions...for example the death of his mom and step dad. He watches these videos daily and he is starting to retaining information. I was surprised the other at the doctors office what he could tell the interns about his disease. It was from watching the video I made for him. The key is repetition over and over.

For future events he uses a calendar. At the beginning, I had to sit with him to fill out the daily pages of his calendar. I still have to help him but it is getting better. I have also made a section on doctors with their pictures. He never remembers going to the doctor. He remembers going to therapy as it was twice a week for several months. Again repetition. It is a very slow process.

I also made him a timeline, from the birth of his mother to the present day. This helps him with past events..for example when we met and married, when we retired etc.

Regarding the kitchen, I put labels on the cupboards and drawers. He did not use them too much so I finally took them down. I have started having him help in the kitchen by doing the dishes or cutting up the veggies. He has been able to help me with this only for the last couple of months.

I also make sure he takes a nap everyday or at least lays down. His brain gets tired. He likes to listen to the radio or TV when he sleeps however that does not let the brain rest and it's very important for the brain to rest. I found a CD named Calm and Confident with bilateral stimulation and he now listens to this when he sleeps. It helps him rest.

When he came home from this hospital, he was unable to fix his pill box. Then after a couple of weeks we sat down to do it together. It would take a least an hour to fix it. I position my chair so I could look outside and see the birds and the trees. This would help me not to lose my patience. Now after doing it week after week, it takes him about 20 minutes now. I still supervise to make sure everything is correct.

It is very hard on him and me both. I have learn to take care of myself in order to take care of him. If I do not get a good night sleep then I do not have much patience with him the next day.

I realized as a caregiver, the more I learn the more I can help him. I have read the book "Life after Encephalitis" A Narrative approach" Ava Easton. This helped me to realize I'm not alone. And this sight has helped me. I also watch peoples personal stories on encephalitis. This helps me to understand my husband better. Sometimes he cannot voice his frustration.

I'm glad you reach out. As mentioned in another reply, no two cases are alike. You need to tailor the recovery for what works for you.

Hope this helps.

[EncephalitisSupport Administrator]

Hi Bengels, thank you for reaching out to the encephalitis team.We are sorry to hear about your brother's short term memory difficulties. Here is a fact sheet with all the information about how to manage memory problems after encephalitis - encephalitis.info/managing-....

The Encephalitis Society facilitates peer-to-peer support groups and carers virtual gatherings, were encephalitis survivors and carers share their lived experiences, ideas and information about coping with the after-effects of encephalitis, this may also be useful to you and your brother.

The Encephalitis Society's support team are also here for you both - please do not hesitate to reach out to us for support on [e-mail] we're always happy to help.

[Ocean96]

Hi Bengels,

I'm so sorry to hear your brother and family have been affected by Encephalitis.

It's very hard to deal with the after-effects of encephalitis and like many say 'an invisible injury'. I had NMDAR encephalitis too, I suffered from short-term memory loss but I personally found it improved over time with lots of support from my medical team such as neurologist, OT, and speech therapist.

Each person is different when it comes to recovering from my encephalitis. My main advice is patience is key and although at times it may be frustrating the encephalitis society is here for you and well done for reaching out!

I'd definitely recommend joining the peer-to-peer support groups hosted by the encephalitis society to see how others cope with the effects of encephalitis.

Also, the encephalitis society have a very information youtube channel - youtu.be/VHmf0hTGbo0(Not working as expected?)

[Gandalf2]

I had to buy a watch that tells me the day and date, plus an A5 ring bound diary. A wall planner may help too - it's very inconvenient!