AVM Survivors Network

Mom of AVM at loss

I am the mother of a 34 year old AVM survivor 2 1\2 month ago and have been taking care of her for 2 months 24/7 and at a loss, looking for some pointers from others around here.
She had an AVM bleed causing short term memory loss. She had Seizures for about 3 weeks afterward but those have stopped since. Her injury was on the right frontal lobe.

All her friends have dwindled fast along with the rest of so called close family. So we go through days of trying to orientate and now are at the point of remembering what has happened on the same or previous days but none of her timing has come back yet. She focuses of people that have done her wrong and spends the whole day on obsessing about it.
Her daily activities are coming back but when she cannot remember a simple task she goes on a whole day of frustration and anger. If someone comes over, who she wanted to see, she withdraws or is rude, usually with the statement that they must be happy about her situation and she feels dumb with the focus of knowing she used to be able to do that before and on goes the day. There are other days but on those days require 80% of my time. We are trying to get a caretaker, a lot of red tape and no results thus far.
I do work at home and am at a point of losing not only my job but my mind, nobody else can get any time because this is a 24/7 job and I am wondering who else is out there that has gone through that.
how do you deal with everything?
I am not deminishing what my daughter is going through but if I cannot keep it together how can I help her?

Hi Edda,

Well you have defiantly come to the right place for support there are lots of people on here Survivors, carers , people in the early stages of avm treatment and so many others who have all been through similar things to what you are describing in your post.

I also had a right frontal lobe avm bleed that caused me to have grand mal seizures in my sleep in July 2013 and was later removed via a craniotomy in novemeber 2013.

I also suffer the same problems as your daughter and can fully understand what she is going through and also how much pressure you must be under to look after her, it is not an easy task but I have found that with these kind of things is to research as much as possible to understand why she is the way she is and believe me she is not doing things on purpose the frustration can be the worst thing to try and deal with , there is a post on here somewhere on this site about "what a brain injury survivor wants you to know" I do find it says a lot about what we have to go through each day and how we feel. I have given my mum a copy as she is my main carer now along with all the other different therapists I have that she has now put up on her wall in her house and I also have the same on my wall.

I have also given a copy to my friends and family as I think its the best way to describe why we are like we are , I to have had many friends and even my wife turn there back on me since July last year and can understand why your daughter feels the way she does about this , it can be very heartbreaking knowing people can just turn there back on someone when they don't understand what is actually happening. But having said that I have since learnt that during the hardest times in our lives you really do find out who your true and honest friends are and they will be the ones that are still there with her now. so in essence the ones that leave when things are bad were never meant to be there in the first place, if that makes sense.

the care side of things is a little more difficult for me to answer as im in the uk and the system over here works different to where you are but I am sure there will be someone on here that can post some valuable information for you to help you with that side of things.

if you ever feel like you need to talk please feel free to add me as a friend on here and inbox me anything more you would like to know , if I can help I will.

stay strong and my thought are with you and your daughter


x x x

What Brain Injury Survivors Want You to Know

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain Injury Rehab takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioural problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to re-join the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behaviour problem arise. “Behaviour problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional liability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts.

Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

I was still in hospital rehab at her time. I hated and still don’t like needing rehab, but it helps a lot. Plus, I get to work with different people. I had to relearn everything, even how to swallow! Now, I am a lot better after 1 1/2 years. I’m in school, not like I was, but I’m there. My friends all graduated and went to college. A couple stay in touch with me, but I’m not making new friends like they are. My mom made lists. Now she says, “you are on your list.” I don’t like needing lists either but now I’m not told what to do all the time. Somehow it’s less frustrating. You should definitely talk with my mom- she’s kind of a teacher in schools. If you friend me ill send you her email.

Hi Edda. You may wish to join some of our sub-groups such as http://www.avmsurvivors.org/group/frontal-lobe-avms and http://www.avmsurvivors.org/group/parentsofavm
There is no age limit on the child for joining the Parents sub-group. Once a parent always a parent.
I read your profile page. I know it seems like an eternity but at 2 and half months post bleed…your daughter is still in the early days of recovery. Many members are still in ICU at this point.
The frontal lobes controls our emotions. The lobes act also act as a filter. As one person said…the lobes keep us from calling our boss a jackass and getting fired. When that filter is damaged…there are huge problems socially.
You may wish to seek out a neuro-psychologist. Someone who specializes in Traumatic Brain Injuries.
Do you belong to a church or temple. Many places of worship have volunteers who help with daycare
of adults.
I did a search for you on this site…http://www.avmsurvivors.org/main/search/search?q=Short+term+memory+loss. As you can see from all the posts you are not alone.
Positive thoughts and prayers heading your way!!

Thank you for your reply, and I could use all the help possible at this time.

Thanks Darren, I will do that.

The resources who were there have slowly dwindled and I do not have a kind of group to pull resources from but will contintue to look.

Hi Edda,

As many of the AVM Survivors will say..your daughter is at the beginning of her recovery. Having a brain injury cannot be compared to any other type of injury. It takes longer for our brain to heal.

Since your daughter's rupture, has her Neurosurgeon discussed a method to remove her AVM or have they told you it is inoperable? Mine was inoperable, however after having radiation my AVM disappeared.

This site is the best place to get answers for you....We are here for you and your daughter!

I wish I has some magic words of wisdom to offer.It has got to be so difficult for a caregiver, especially since you're also a mom. I am still in awe over all that my husband did after my bleed, long hospital stay, then rehab, then recovery at home. It sometimes think it's harder for you than for us, going through it. Please know, like a lot of others have said, this is so very early in your daughter's journey. Improvements can be slow, but they do happen. Please find a therapist, counselor, good friend, anyone that you can talk to about your frustrations and your fears. And know that we are all here for you as well. You must take care of yourself too.

Hi, Edda - Sorry, I don't have the vision skills to read all the replies so forgive me if I'm repeating. I'm 33, almost 34. My bleed was 3 years ago. It was really bad - I was still an inpatient at 2.5 months but they let me out bc I was extremely intent on flying home. (I lived in Oregon, and moved home to live with my parents near DC.) My parents are my full time caregivers, especially Mommy. I reentered their Empty Nest so the least I can do is to keep things "interesting" for them. I try to show more signs of life around Daddy, esp since he was really broken up about how I got sick. I lost my Old Life, and it is a decision to be happy several times a day for me - I went from complete independence to living with my parents again. You cannot take care of your daughter unless you're okay. But it will be hard for you to be okay if she is still angry about what happened. It is natural and understandable to be angry - I know I was. But a friend (a paraplegic post car wreck) asked me once, "Is it okay that you lived?" That's the root of the problem. Sending you a hug, atnt

Simply put, I will pray for you and your daughter.