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Helping mom

KOL
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How can I help my mom recover faster from Encephalitis? 3 weeks after her diagnosis.

KOL

Explore topics in this discussion:

Aricept Memory Encephalitis Neurogenic bladder Acyclovir

13 replies

Lil

Welcome to this group of friend, family, caregivers and survivors of Encephalitis. I'm sorry you had to find us, but sure glad you did.

We are not professionals, just people who have had this dreadful virus/disease/sickness. All of us have experienced the same thing, yet all of us have experienced totallly different systems/residuals.

One major thing is to be PATIENT!! If she wants to sleep, let her. That is the time that her brain is trying to restore or rewire it's self. If she repeats herself, have patient and answer like you did the first time. But please don't say "Mom, I already told you", or "Mom why can't you remember?" Things along those lines.

Help her to remember if she is having trouble, with post-it-notes, pictures or something like that. If she is able, have her join this group. Most people take up to 2 years before being where they will be. Some people are quicker, but the average is 2 years.

There are other people who will answer with more indepth of information. Just hand in there. Ask as many question as you want. Someone will have a suggestion/answer for you.

Blessings,
Lil
HSE I 2002

petersencm

so much help you will be given but can I first suggest something. You will find a bit more help if you could give just a wee bit more info. What kind of E. How is she thus far physically and mentally.
I will too say that 3 weeks is not far into it at all. The largest improvement happens at the beginning but after, like Lil said, a little rewiring takes place. They told my family and friends "don't cry or laugh in front of her because of what she says or does" - They knew, to ME, I was 'normal' and seeing others emotions wasn't really going to help me. I so much laugh NOW at some of the silly things I said and did those first 3 weeks. It was hard for family not to laugh or cry with what they noticed in my changes at first. After a few months I was so much more back to normal (accept memory. that is, to this day, a problem)
Anyway -
Is she home yet. If so, again, how is she physically. That helps us all know more about what you need to face.
We so much hope we can help you.

KOL

She had Herphatic Encephalitis...but they didn't do a spinal tap so this was based on opinions of Neurologist and Infectious Disease Specialist. She is home with me and my family and I am administeriing her last IV's today. My dad (an Alzheimer's patient) has also moved in with us. She was his caregiver so I am taking care of them both...along with my husband, 4 boys, 2 dogs and a bird. My dad is in the early stages of Alzheimer's so he mainly just repeats things and is forgetful. My mom is sleeping away most of the day. We get her up for meals and have her come into the kitchen to eat. We have taken her on short walks. She will start PT on Monday. She watched a movie with me last night for the first time. Mom is a retired school teacher and is very well-read so we are hoping she will come close to her baseline.

petersencm

Does she remember what things are called, who people she knows are. Does she remember, for example, what kind of 'coffee' she likes? Basically, is she showing signs of having forgotten lots of things?
Briefly too, is she physically seeming to be fine. I know not totally normal right now but any obvious disabilities?
Again, that info gives so much help in us helping you.
thanks so much for this info. There was no help like this when I was sick.

MichelleN

Was your mom able to follow the movie? I couldn't watch TV at first because it was too confusing. I couldn't recognize people when they changed clothes. My mom had me watch sports because they didn't change clothes.

Have you been able to ask questions of what she remembers? It took us a long time to figure out what kind of memory problems I have. They were able to figure more out when it came to my past than the doctors.

My family asked me to do easy chores after they had some ideas what my limits were. Easy chores at first were things like brush my hair to make sure I could do that before they tried something else.

Michelle

KOL

My mom is able to brush her hair, teeth, put on her clothes (although we help with this) She can take a shower (I stand beside the tub). She can write out a check and read. She remembers some things, names are very hard. Doesn't remember much at the hospital. She does watch TV...we watched MILK last night and she seemed to follow it although she didn't comment much. Her last Acyclovir treatment is tonight...I am looking forward to this since I am administering all IV's. My father has Alzheimer's and she said we would have to hire a sitter now for him. I thought this was a good comment since she is reasoning.

KOL

SickOfBeingSick

Hi KOL,

You certainly have a full plate! Don't forget to take care of yourself in all this.

I love to read and was frustrated at first that I couldn't read things I used to. I just couldn't follow them at all. Reading childrens' books helped me tremendously. Started with simpler story books, then moved up to reading the entire Lemony Snicket "Series of Unfortunate Events" books.

Writing and posting to forums like this one have helped me a lot. Not just from the vantage of getting support, but organizing my thoughts, learning to communicate again, practice with finding words, etc. Spoken communication just flies by too fast for me.

Cathy

MichelleN

I was able to do things like brush my teeth, but I tended to forget at first so my family made sure I did.

I don't always remember my name. I have to associate someone's name with something if I plan on remembering it.

I'm pretty good at reasoning, but other things are what I have problems with like reading. I can't read anything longer than a paragraph & that includes kids books, but I did manage the Wizard of Oz books because they are so short & I had read them before.

Cathy is right about remembering to take care of yourself. That is something my mom had a hard time with.

Michelle

plbubba

How old is your Mother? My Mother was 77 and in good health when she came down with HSE. She is in a nursing home for rehab. You have to take one day at a time. The progress can be really slow. Her cognitive ability was really affected. She still has a neurogenic bladder. As to your Father, has anyone suggested Aricept. This medication will not improve his memory but it will help it from getting worse. My Father just started taking it due to him memory and that there is a strong family history of Alzheimers. Remember we are all here and take one day at a time.

KOL

My dad is on Aricept and Namenda (for Alzheimer's). My mother was in a re-hab/nursing home for 4 days and they missed 3 doses of Acyclovir (said the medicine wasn't available) then gave her stool softeners and Milk of Magnesia for bowel movements and when she had one they gave her Immodium to stop the diarhea...I brought her home to my house along with my dad because it was too much trying to keep up with bad nursing and going back and forth out of town. I don't work so I can stay home with them during the day...although this taking up all of my time while my kids are in school.

SickOfBeingSick

KOL,

Can you get a home health aide from your state Health and Human Services Department? I have someone that comes twice a week to help me out.

I don't know what your money situation is, but also, when I was working for practically nothing, had young children, and was strapped for cash and time, I would hire a neighborhood teenager occasionally for a couple of hours to help me out. I would create a "To Do" list and turn them lose on it.

Cathy

KOL

That is a good idea...I have been paying a sitter to come in when I need to go out by myself, but I need to check into other resources. A whole new world to delve into! My mother's illness (HPE) has confused my dad (an Alzheimer's patient) I had never seen my father cry until 3 weeks ago....now he cries at least twice a day.

KOL

KOL

I am really frustrated by the lack of info on Encephalitis. How long are people supposed to be in sleep mode. My mother is sleeping about 20 hours a day. The neurologist said to push her...she is 73 and I want her to get better. She has just finished 21 days for Acyclovir and I need to know what to look out for.

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